Monday, August 31, 2009

We are finished with radiation!

We are finished with radiation! Our appointment this morning was bright and early (7:30) and we drug ourselves out of bed for the occasion. Charlotte finished her treatment and then spent over 30 minutes waking up, drinking her chocolate milk, and then changed into her beautiful "teapot" outfit that came from Aunt B and Aunt Lynn. She was actually not TOO shy for the occasion and did a great job banging the going. Then we got many gifts from the folks at the proton center including a balloon bouquet, a tiara/princess set, a piggy bank, and a toy learning laptop that looks like a lot of fun. We said goodbye to some of the friends we had met while at the proton center, got the a-ok from Dr. Mahajan, and set off for the rest of our day.We decided to go to Chilis for lunch where I had a HUGE margarita. If you don't know, Chilis is doing a huge 10-year, $50 million fundraising campaign for St. Judes hospital. They are 5 years into the campaign and have already collected over $25 million. They were doing a "color the chili pepper" campaign so we decorated a chili pepper and donated some $$ to the cause. ALSO found out that September 28th, selected Chilis restaurants will be donating 100% of their profits from the day to St. Judes. Check out the Chilis in your area to see who is participating!After a yummy lunch (Charlotte ate a good bit of a grilled cheese and mandarin oranges), we tried to head over to the fine arts museum as that was one of the last "places of interest" we hadn't tried yet. Unfortunately, it's closed on Monday. Oh well.We came back to RMH and we've been chilling and packing slowly but surely. We are going to try to get as much packed as possible and then hit the Museum tomorrow before we leave for the airport. We also just spoke with the psychologist who did the neuropsych eval on Charlotte to collect a baseline. The basic results are that she scored in the high average range in all areas except motor and her vocabulary is in the 98-99th percentile for her age. Is anyone surprised? Ok, just checking. Before I forget, thanks to everyone who sent us cards, care packages, and all kinds of encouragement during our stay here in Texas. Everything helped to brighten our time here. Roger now has a ticket to go to the Texans/Vikings game tonight thanks to a wonderful donor to RMH. He should get to see Brett Favre play at least one more time! Monday Night Football! Yeah!

Sunday, August 30, 2009


DADDY'S HERE!!!(this is Roger)The trip out had minimal adventure although at one point, I was told by the Hertz Customer Service rep I couldn't get the rental car until 5:30am Sunday because my flight gets back in after the airport "closes."Fortunately, the people at the actual Hertz location in Hobby are better informed and they told me they have to wait until all flights are in and several come in after Midnight.So I got the car. That's about as exciting as it got except for the amazing scenery out the window. Some pics are on the "Roger Reynolds" Facebook site.I got to The House a little past 1am and Rachel was still up. Another sleepless night as I'm still fighting the gunk and coughing is the big pain.Charlotte had been in bed for quite a while so she was out. The unfortunate part was that she woke up about 5am asking for a book from Mommy. I went over and let her see me. She was kind of out of it so it took her a moment to figure out what was happening. Of course when she did, she held out her arms to give me a hug.Then the focus shifted quickly back to books. I put on a mask and gooped up with sanitizer trying to expose her to a few germs as possible while getting some lovin' in. We have spent the morning reading, playing the spelling game on my iPhone ad nauseum, and watching the Sleepytime video. Her numbers are ok so I'm not too nervous about being around her. Just kind of.We're inviting any Houston area folks to stop by The House this afternoon starting about 3. Nothing official or organized. Just a chance to see everyone again and say thanks for all the help.

Saturday, August 29, 2009

Daddy will be here in less than 12 hours!

Daddy will be here in less than 12 hours! Yay!Late afternoon thunderstorms greeted Houston last night. We got some rain and thought our trip to the outdoor theater might be a bust, but the rest of the rain seemed to hold off and the lightning seemed to be distant enough not to bother us. The Luma Light Show was really neat. Here's a link to their website. The show has the performers and stage completely DARK and then the performers use puppets, juggling, large ribbons, sparklers, and other tools to make fabulous designs and dances on the stage. All the girls enjoyed it. We only stayed till intermission, though, because everyone was getting tired.Slept in this morning (Charlotte slept till after 10!!) and then we went down to another catered breakfast. Mikayla (our 9 year old friend) had a plan to set up her "nail salon" in the lobby and paint anyone's nails. I have some pretty sparkly purple polish on my nails now! She did a great job. Charlotte played for a bit downstairs and then decided she wanted to come back upstairs. I have spent the time vacuuming, cleaning the bathroom, and doing some initial straightening and organizing. There are piles to mail back to VA (at least 2 boxes!), piles of things that we may be donating to friends or just to RMH, and then, of course, have to pack up all the clothes, hats, etc. Fortunately our friend Halle just got a great donation of some duffel bags and shared one with us. That will help us with the journey home. I asked Charlotte if she wanted to do anything today but she seems pretty happy to lay low and play in her room. So that is what we will do. Sid the Science Kid is playing on the DVD player right now. We found out yesterday that she has an appointment with Dr. Khan early Wednesday afternoon. Dr. Khan rearranged his schedule to accomodate Charlotte next week so we are really grateful. Also, Roger got a call last night that they have scehduled her MRI for 8:30 that morning. I guess they want to get an initial scan already. So SCANXIETY has settled in with me already. It's not horrible but it's there. I'm trying not to get myself too worked up (I mean, really, what can I do about it? Que Sera, Sera) but every scan since May has given us disappointing news and I am really hoping that this one will buck the trend. On the other hand, it's better to get it over with now rather than wait a whole month. That could drive me bonkers too. So please begin the prayers for a clean scan. We need it to be as clean as possible!!!More news to come by Monday I'm sure.Rachel

Friday, August 28, 2009

One more radiation treatment to go!!!

One more radiation treatment to go!!!Thursday was a pretty easy day. Not much to report. We did go with Halle and her mom to the Children's Museum. It is FREE on Thursdays from 5-8 PM. Since school is back in session in Texas, the crowd wasn't TOO bad. The girls had a great time exploring all the exhibits.Today we had our penultimate radiation treatment. We are getting very excited. Charlotte also got to see our friend Talia ring the bell for the end of her treatment (YAY). After she finished and was waking up, I gave her the Chocolate Milk (Instant Breakfast) that has become her routine post-treatment. She started gulping it down. Then one of the nurses brought her some more food and she ate two small chocolate doughnuts a shortbread cookie, and a handful of grapes (why do i feel like I'm retelling The Very Hungry Caterpillar?) We got back to RMH just in time for lunch (well, I was hungry!). Now Charlotte is watching movies and I'm going to have my "rest time". We have tickets this evening for a Luma Light Show over at the outdoor theater in Hermann Park and we are going with some of our friends from RMH. Tomorrow will probably be some packing and hanging around. Roger arrives late Saturday night (after midnight) so "Daddy time" will officially begin on Sunday. Charlotte has been so funny. The nurses and technicians at the proton center keep asking her if they can go back to Virginia with her and she says, "No! You have to stay here and work!" Very funny. OH! Big news! Some of you may or may not know that lately Charlotte has been rather partial towards Daddy and while she is not outwardly mean to me (usually), she has said things like "I don't love you Mommy" or has definitely picked being with daddy over me. I know on a certain level that it is a very "normal" childhood behavior, but it's also been very difficult to hear her say "I don't love you" or get a nonresponse from her when I tell her I love her. Anyway, this morning, on the way to radiation, Charlotte snuggled up to me in the van and (unprompted) said, "I love you mommy. I love you SO much." That made my day. I may not hear it again for a while but it doesn't matter. That makes me happy.

Wednesday, August 26, 2009

Randolph-Macon College Field Hockey and chemo options

I was going to surprise you all with the good news but I was too slow and those on-the-ball (no pun intended) Randolph-Macon College Field Hockey Lady Jackets beat me to it.The Friends of Jaclyn, an organization that matches up young girls (with health issues) and female collegiate teams, orchestrated a connection between Charlotte and the field hockey team at R-MC and they’ve already started signing the guestbook. This should be very exciting since I never got much of an opportunity to watch them play when I was teaching there. Thanks to Coach Carper and the whole field hockey team. Here’s their website if you want to stay updated throughout the season:
On to other news both good and bad. The good news is that as horrible a two week stint as we had about two months ago where we were losing about one CB child a day, lately, we are seeing a rash of wonderful stories including Megan Blake’s final treatments, Reese’s continued recovery, and Nile Price’s AMAZING defeat of sickle cell! (seems he has picked up his bone marrow donor’s peanut allergy but, as he put it, it’s a good trade!).
Maddie Mingloski, possibly the second most adorable little girl in the world (she's tied with about 1000 others), has entered Long Term Maintenance (which is very good) Here’s her site.
Yet, there are always those stories with which I’d rather not burden everyone but these families need your support/positive energy probably as much as any of us. Here’s just a small list of children who have recently gone on to the next part of the journey. The stories can be rough but I know the families sincerely appreciate being on people’s minds.
Liam Riley:
Owen Lea:
Anika Wilke:
We keep plugging along and fighting the fight but it always comes back to, “this should not be happening to these children.”
Last but not least, I had a dream last night that CJ was getting treatment in a super posh high-rise office with a huge bowling alley and tons of other very cool things to do! I’ll bet there was a spa for the grownups somewhere. Need to find that place. It’s a very happy place. :-)
Did we mention that I will be flying down to Houston Saturday night! Did we also mention that we’ll all be flying home, AS A FAMILY, on Tuesday? How strange will THAT be? And cool.
Gotta go take a nap!

First of all, a moment of silence for Senator Ted Kennedy. Regardless of your politics, he was an amazing individual who has done great things for this country. His leadership will be missed.Another early morning, another walk to the proton center. We were finished by about 10:30 and headed over to MDA main hospital for our check in with Dr. Wolff. We reviewed the protocol and made a few "tweaks" based on our traveling schedule. He is going to keep her on the topotecan until Wednesday of next week and then we can jump into the new drugs the following week at home (hopefully). We are still trying to firm up a clinic time with Dr. Khan and the folks at MCV but I am hoping that will be resolved by Friday.I asked a lot of questions to Dr. Wolff today about the chemo. Does each drug do the same type of thing? Do they do different things to the tumor? How will we know when to stop chemo? How do we know which drugs are actually working? Etc. The short answer (without taking a course in basic oncology and getting a degree from medical school) is that cells have what is called apoptosis, or cell death. Every cell in your body has a certain life cycle and potential for apoptosis. Some cells such as your white blood cells have a very short lifespan in the body (which is why when chemo stops new cell growth, your counts drop because your body isn't making any new ones. You get neutropenic...and then you run a bigger risk of getting sick). Other types of cells have longer lifespans. Cancer cells have their own cycles of apoptosis and there can be multiple types of cancer cells within a particular tumor. The trick is to find the agent that kills the cell at just the right particular stage of each type of cancer cell. There's the tricky part. We already know that some of the drugs we were using did not do the trick. We are trying this new regime of drugs and will see what it does. That, combined with the results of the MRI, will dictate the course of treatment for the future. Unfortunately, sometimes it's difficult to tell what is really, truly working but the morphoproteomics analysis is supposed to help with that. That, of course, is the basis for her current protocol so that is promising. There are three reasons why we would stop chemo:1. The tumor is still growing or there is new growth2. The side effects of the chemo is detrimental to her health (usually blood counts too low)3. There is no sign of cancer/tumor cells for a particular period of time. This varies depending on the cancer and is basically determined by the history of previous patients with similar tumors and the likelihood of the cancer returning after chemo regimes of a particular length.So we could be on this chemo regimen for a long time. It is very dependent on the post-radiation MRI and the success of these new drugs. We shall see. At least the oral drugs are very managable and she seems to be tolerating them well. That is a positive in our favor.After the clinic, we dropped off the prescription for more topotecan and headed back to the house. We had some lunch and then Halle and her mom invited us to walk with them across Hermann Park and over to the contemporary art museum. The stroller brigade was ON! It was a good walk. Amy (Halle's mom) is a runner and is in MUCH better shape than me so we definitely went at a good pace. It helped that she had the jogging stroller too! The contemporary art museum was small (but FREE!). There were some very unusual exhibits. Most were three dimensional with mixed media and many also featured video or sound. Halle kept saying "I don't get it." Neither did we half the time. But some of it was really interesting. I think everyone's favorite was the Fundred Dollar Bill exhibit. This is a very interesting project going on all over the country and we contributed our own artistic "money" to the cause. For more information on the project, go to After the museum, we zipped back to RMH and I needed a shower. The afternoon was spent with movies and dinner. Ronald McDonald stopped by to visit too but Charlotte wasn't too interested. So that's all the news to report. Not much in the way of action but one step closer to home!!Rachel

Tuesday, August 25, 2009

I'm holding my breath...

I'm holding my breath...Charlotte has been on the verge of something for the past two days. I am hoping that it is not a neutropenic fever. They drew her labs today and I probably should have heard by now if there was concern, but she is definitely sluggish and lethargic, fluctuating between warm(ish) and cold/clammy. But no fever. She also needs to poop so I am hoping that is the issue. The lactulose has been administered so we are just waiting.Yesterday and today, we finished radiation in record time. We have spent both afternoons at RMH, mainly in our room. I had some romp n' roll work to do yesterday and today as well as a conference call for work so Charlotte has kept herself busy. Mostly with movies. She got yet ANOTHER gift from one of the nurses yesterday. They gave her a HUGE Frosty the snowman throw blanket that is OH SO soft. Today she asked for Frosty and all the "girls" passed out lyrics and sang along. Right now it's raining. Second day in a row that we've gotten a good, solid afternoon storm. That does really help to clear the air down here. So I don't have much else to report. Please say a prayer that we are NOT headed back into the hospital. I really would not like to bookend our time in Texas with another inpatient stay.

POOP!!!!!!We have said it before but I'll say it again: Hooray for poop! She finally decided to "let go" around dinner time and I'm glad she has a strong diaper! Without getting too graphic, I will just say that it was HUGE. True to form, she is almost instantly more lively and animated. She has been reading her books and playing in our room for the last hour. I'm still not 100% confident we're out of the woods but I am breathing a bit easier. Hooray.

Sunday, August 23, 2009

Another "grand adventure" for us here in Texas

Another "grand adventure" for us here in Texas. We certainly can say that we are making the most of our time here. It was another day to sleep in and after breakfast, Charlotte and I headed out on the buses again. This time I had the route planned and we left right from the stop in front of RMH. Our first stop was Rothko Chapel. It is on the campus of the University of St. Thomas. The chapel was commissioned by Dominique and John De Menil (I have no idea who they are) and built/designed by Mark Rothko, a well-known abstract expressionist artist. The space is unusual, serene, and interesting. The outside looks very plain (just a nondescript brick building). The interior is a round(ish) shape with 14 large, dark painted panels placed around the room. There is natural and artificial light coming in from the top of the chapel. When you step in, the space seems rather dark. But as you stay within the space, the light fills up the room. It is almost like dawn taking place within the room as you sit there. It is a very quiet space designed for prayer and contemplation. The center celebrates all faiths and based on information on their website, they have frequent special events. The place is also open to the public daily for prayer or meditation. There are benches and kneeling pillows within the chapel. The interesting thing to me about the painted panels was that they were a great focal point for meditation. Each one was unique and some of them had brush strokes that evoked images or designs, even though they were basically monochromatic panels. It was almost like looking at clouds and finding shapes within the brushstrokes. I am sure that everyone would see something a little different. We stayed in there for a little while and Charlotte did a great job being quiet. She even whispered "tweet tweet Mommy" when she wanted to get my attention. From there, we hopped on another bus and headed over to the movie theater that was across the street from (DUN DUN DUN...) COSTCO. So we had lunch (pizza and ice cream, of course) at Costco and then went to the 2:00 movie to see Ponyo. If you haven't seen this movie yet, put it on your list. Roger and I have been fans of Miyazaki (the writer/director) since we saw Spirited Away and we have since seen many of his other great movies (Howl's Moving Castle, Kiki's Delivery Service, My Neighbor Totoro). Each one is a visual masterpiece and the stories are sweet fairy tales. This one is his version of The Little Mermaid. Charlotte was mesmerized and really enjoyed the story. There was one part where the boy was looking for his mother after a storm and when he couldn't find her, he began to cry. Charlotte started to actually get upset too but I assured her that everything was ok (and the mom appeared in the next scene...All good!)After the movie, we hopped back on the bus(es) and just got home. What a full day! Back to the grind tomorrow with proton at 8:30. Let's pray that everything goes according to schedule this week with no machines breaking down. That would be good!!Rachel

Thursday, August 20, 2009

Pretty good day today

Pretty good day today. It's still hot and humid as hell. I think that's my biggest complaint. (Can you do anything about that, God?) Otherwise, a good day.Proton was at 10 today so not too early but not too late in the day. I got the princess up around 8-ish and she was NOT happy. First of all, she slept in her scrubs (didn't want to put on PJs), which was fine, but she also didn't want to change her clothes, change her diaper, or have her teeth brushed. And her breath STANK!!! Unfortunately, there was no arguing with her, so Grumpy and I just left RMH as-is. We trekked over to MDA first because I had an important mission. Many of you know how rabid I can be about recycling. I'm not a raging environmentalist, but I try to recycle as much as possible. We even recycle at RNR (We collect all the cardboard, glass, plastic, cans, etc. and haul it back to my house to put in with our home recycling). I just refuse to let REFUSE that can be recycled go in a landfill. I think it's a pretty easy thing to do if you're organized about it and have a place in which it can be deposited. It just takes a little effort. And, yes, I feel INCREDIBLY guilty about Charlotte's diapers. If I knew we would be back in diapers at this age, I would have started cloth a long time ago!!Anyway, I digress. So RMH doesn't recycle. They have ONE container for aluminum cans but even that isn't well marked so people even throw the aluminum cans in the trash. The dumpster fills up every day with plastic bottles, cardboard, glass, mixed paper. AGH! They DO recycle at MDA in the cafeteria and a few other select places so I've been trying to take at least the plastic bottles that I have personally used and deposit them in the recycle bin there. So if anyone in the Houston area wants a pet project, maybe they could work with RMH to get some kind of recycling program going? Sounds like a great Eagle scout project to me. I know that some places will even get their own recycling dumpsters on their property and then get income from the recycling material once it is hauled to a recycling center. I don't know if that can be done here, but it's worth looking into. So Walter Johnson was our shuttle driver again and he took us over to the proton center. Once that was done, I decided not to brave the heat and just hang out until the 12:30 shuttle from RMH. There were two adult patients "graduating" today so there was food for celebration. Charlotte really enjoyed noshing on some brownies and was telling all the little old ladies her mantra ("chocolate makes everything better").Then the RMH shuttle driver came to pick us up and we headed back to the house. We've been here all day, alternating between spending quiet time in our room and socializing with the other kids downstairs. It was a quiet but good day. This was one of those rare days where there was no group coming in to provide a meal so we were on our own. I didn't make it to the grocery store as I had intended so I got "creative" with my dinner. Here was my recipe:1 can of chicken breast (drained and cut up)1 package of frozen broccoli (steamed and cut up)mix chicken and broccoli in a bowl with black pepper and garlic/herb seasoningadd fettucine alfredo noodles from a frozen dinner left in the community freezerI made a meal that was big enough to feed three people and the 770 calorie, 46 gram of fat frozen dinner became instantly healthier when I ate less than 1/3 of the pasta and sauce and just added chicken and veggies. And now I have leftovers for tomorrow or the weekend. I love it when I can make a meal like that. Big news on the fundraising front: looks like the concert series tonight raised about $250 for us. Thanks to everyone who came out. I will let Roger name our specific angels since I missed it all...ALSO, the ReeseStrong 5K and Charlotte Reynolds Lollipop Kids Run is starting registration. You can go HERE for more information or also go to On that note, once we get back from Texas, I want to jump more seriously in getting CJSTUF (CJs Thumbs Up Foundation) officially up and running. Our friend Colleen has developed a logo that I love and will be used in our upcoming website (still in progress). We will need to set wheels in motion to officially launch the foundation so if anyone wants to lend their expertise in that, please throw your hat into the ring. We are not 100% sure yet what the charitable "focus" of CJSTUF will be, but that's part of what the Foundation and its board will determine. I will sign off now as I need to get the princess in bed. I finally convinced her to take a bath although I did NOT succeed in getting the teeth brushed. I pick my battles....Think energetic thoughts for Roger. He has a long day tomorrow again.

Wednesday, August 19, 2009

I got to see football!

Hi! Roger here. It's been a very, very busy few days since I've been back so I haven't had too much time to write. Rachel is doing a darn fine job of it anyway so I'm sure I wasn't missed too much.
This post is very long and has next to nothing to do with Charlotte so if you’re looking for CJ related stuff, feel free to skip it.So, I had something of an adventure on the trip back to Virginia. They say all roads lead to Rome. Well, all Airtran flights fly through Atlanta. Or at least most of them. Which is why I was in Atlanta on Sunday night at about 8:00pm waiting to board the plane from Atlanta to Richmond. As they were getting ready to open the doors, the gate agent got on the speaker and asked if there were any passengers who would be willing to give up their seats because they had overbooked the flight. They would give each volunteer two free round-trip tickets to anywhere Airtran flies, hotel accommodations for the night, a meal voucher, and a seat on the next plane out (Monday morning 8:05am; arriving 9:35am).
I quickly checked with both Rachel and Annette (the fearless Romp n’ Roll front desk manager) to see exactly when things got started Monday morning. We had a special free preview class planned at 10:30 and I took a calculated risk that there would be no significant delays and I could get to RNR by 10:30. Just in case I texted around to a couple other employees and got Miss Anna (all hail, Mack-Daddy-Momma Anna!!!) to come by in the morning JUST IN CASE.
Everything seemed in place so I volunteered. They did, indeed, use my seat, and at least three others, so I got to spend the night in the Sheraton Gateway Hotel in Atlanta with a big o’ hairy (not really hairy, that would be gross!) king-sized bed and a flat panel tv with the NFL Channel in HD!
I got to see football.
Who cares that it was pre-season with two teams I care nothing about?
Here’s my little informational review of the Sheraton Gateway Hotel in Atlanta…it ROCKED! Very, very nice. Cool soap in the bathroom, too.
The only not-so-good thing was that the other “Airtran refugees” and I were talking to a guy who was telling us about the horrors of getting through Atlanta Hartsfield-Jackson airport security on a Monday morning and knowing it’s the busiest airport in the world, we had no reason to doubt him. We decided as a group to meet for the shuttle at 5:25am to make sure we had plenty of time to make the flight. It was already coming up on 10:30 by the time we got into the rooms and I was so nervous about being late that I really didn’t sleep much. I set my iPhone alarm twice and called down for a wakeup call at 4:55am.
I tossed and turned all night and finally got out of bed at about 4:30 to get ready. I was getting ready to walk out the door when my 4:55 wake-up call came through.
At least I was there early enough to take the 5:05 shuttle to the airport. It took me all of 5 minutes TOPS to get through security and I was sitting at the gate, enjoying the spoils of my meal voucher by 5:30. One very interesting thing is that while there weren’t many people at the airport when I got there, they were set up for the crush. The zig-zag maze they have for the busy times has got to be 90-100 feet deep. That’s a lot of back and forth. Reminded me of a Disney ride line. Or maybe the “Line Ride” on South Park (TRIVIA!!!)
Anyway, we’re sitting there waiting for the time to pass; I’m reading Inkhart and starting to get really into it but I have to stop every chapter or so (they’re short chapters) and rest my eyes. That lack of sleep fatigued feeling is creeping in and I’m starting to really worry about the day awaiting me at Romp n’ Roll. I basically have no room for error with the timing of the flight, then I work the entire rest of the day with virtually no break until the end of the day at 7:30. Then after that, I had scheduled a rehearsal for the backup singers for the thing I’m doing at Rompy’s Summer Concert Series tomorrow.
I’m thinking to myself, “What have I done? There’s no way I’m going to make it even if I get a short nap on the plane.” I think I called myself a few choice names that I can’t repeat here.
And there was always the nagging fear that I wouldn’t make it to Romp n’ Roll in time.
Now, you have to realize that I hadn’t spoken to Rachel about this yet. I knew she would fuss at me if I told her my plan and if I screwed up and missed the class, I only wanted to get yelled at once when it all hit the fan. I was just trying to be efficient! :-) I also didn’t think Rachel needed the added stress. Especially if everything worked out. See, I was being thoughtful, too!
The gate agent finally started getting everyone ready to board and they announced that they were looking for volunteers to take the later flight as this one was overbooked! HA! The thought DID cross my mind but only for a second. I mean, what kind of hero would I be if I came home with FOUR roundtrip tickets to anywhere Airtran flies? I would definitely have missed the free preview class (with 20 kids registered!) and probably at least one other so my hero stock would have dwindled. I would have lost a lot of Venus/Mars points (More TRIVIA!!!) so it really wasn’t worth it.
Another thing about Atlanta Hartsfield-Jackson International Airport: it takes FOREVER to taxi out the actual runway. I think it took us a good 25 minutes to get out there, all the while I’m drumming my fingers nervously and my leg is bouncing like the “energetic” woman’s who I sat next to on the way out. I think I said, “Let’s go, let’s go, let’s go, let’s go” about a hundred times.
Finally we got up in the air and I was completely planning to lay back and sleep but I was simply too nervous and Inkhart was calling to me. So I read, drank some tea and coffee, and finally took a power nap on the descent into Richmond.
We got in about 7 minutes late and I still had to pick my guitar up from the Airtran baggage office, get the shuttle to the Park-n-Go lot, find the car, pull out all the pertinent cards (AAA, frequent parker, and credit), pay, and drive the 20-25 minutes to RNR.
I got to the baggage office and there was no one there but I could definitely see my baby sitting in there. It was safe so I decided to leave and come back late Monday night and get it.
Then I went to the courtesy phone and called Park-n-Go for the shuttle and they told me it was already at the terminal. From here on out, it was something of a dream the way everything fit together. I walked out, walked right onto the shuttle and within a couple minutes, we were headed to the lot. The only other guy on the shuttle had a problem related to a car that his father left there and the keys which no one seemed to be able to find (this was all discussed on the radio on the way over). This could have been a seriously delay but the shuttle driver had a great head on his shoulders and dropped the son off at the office so he could take me to my car first. It was also very convenient that right next to my car (Rachel’s blue Bug, actually) was a man waiting to be picked up to go to the airport.
I got loaded up and zipped out to the gate to pay. For all the cards, papers, etc…the attendant had to juggle, she got me out in very short order and I was on the road to RNR by 10:07. Good thing I just happened to pack a clean RNR shirt. Not sure what made me do that.
Traffic was light and I stayed calm, not wishing to go too fast and risk a ticket. Barring anything like a flat tire or bad traffic, I felt I was going to just barely make it. On the way, I called Airtran baggage and they told me I could leave the guitar until Tuesday morning which was fine by me!
I walked in the back door of the store at 10:28! Anna was there JUST IN CASE and so was a multitude of children! The class had 20 kids pre-registered and another 13 dropped in unannounced! Don’t forget that includes their grownups and a few grand grownups. YIKES!!! So it was completely nuts and very convenient that Anna was there. I asked her to stay because I knew I would never have been able to effectively teach the class with that many kids.
I stayed awake, it was a great class, as were all the other Monday classes/camp with the exception of when the wild and crazy all-girls 6:30 Rhythm n’ Roll class staged a revolt and everyone abandoned the class 15-minutes early so that they could all go get water. :-) I have little to no control over that class but we have a great time!
Rehearsal went well and I can’t wait until the concert tomorrow. It felt awesome when I realized that everything would work out the way I wanted it to.
I love it when a plan comes together!
p.s. Another great thing about the 2 free round trip tickets is that Charlotte and I can now go the New Mexico in September (if she’s up for it, that is). Aunt B and the NM contingent are walking in a fundraiser for the local cancer treatment center and they’re all wearing “Charlotte” hats. As a bonus, Becky (Aunt B) promised me that if I could get CJ out there for the walk, she would shave her head!!! She promised me and now I think we can make it. Now I’d like to line up a bunch of women in the Farmington, NM/Durango, CO area willing to shave their heads so Aunt “Not-so-Hairy” doesn’t have to do it alone. Everyone put your feelers out and spread the word.

This morning dawned EARLY!

This morning dawned EARLY!Actually, I should backtrack. Last night, after dinner, we were invited by Mikayla's family to take a field trip to the Chocolate Bar. How could we say no? Charlotte and I were the only ones who had actually been there. We had mentioned it the other night while chatting and Halle and her mom had gone past it on the bus but had never gone inside, so all 10 of us got into two cars and made the trip. Because, as the mantra goes, "Chocolate makes everything better". I got a few select pieces of good stuff (went with the dark chocolate peanut butter cup again). I asked Charlotte what she would like and she seemed to gravitate to the little chocolate coins again. I tried to interest her in other things but finally only managed to get her to agree to a slight variation (a chocolate star). I asked her how many she wanted and she said "just one". I asked her this MANY times because I was more than willing to buy her a few pieces. She kept saying, "just one." Well, I bought two (just in case). Sure enough, she downed both and asked for more. I bought four more and she at two of those! We did a little more window shopping in the area and then went home, full of sweet stuff.VERY funny story: we drove to the Chocolate Bar in a large passenger van. Charlotte was sitting in the back in her car seat. At one point while looking for a parking spot, the van had to go into reverse. Charlotte starts going (very quietly) "beep, beep, beep". I asked Charlotte what she was doing and she said, "We're backing up." That cracked everyone up!I made a very vain attempt at an early bedtime for Charlotte but she kept saying "just one more book". She finally let me turn the lights off around 11 (!!!). I was up at 5:45 AM and showered and dressed. Grabbed some breakfast and then I didn't even bother to dress Charlotte or change her diaper. Just put her in her stroller at 6:30 and we cruised to the proton center. Watched the sun rise. At least it was relatively cool. Still humid as all get-out but I was only partially drenched in sweat after the 20 minute walk. We were done with radiation by 8:30 and proceeded over to the MDA main building. In the meantime, she ate some cheetos (her new favorite carb) and drank her chocolate instant breakfast and changed into her outfit (the Dora/Diego scrubs today).Charlotte's appointment was not officially till 1 PM but I was hoping they could see her early so we could just get on with our day. They did see us by about 10-ish. As expected, Dr. Wolff was very happy with her progress and shared plans for her return to VA. She has a new protocol that consists of 3 different drugs in rotation (usually two at a time). Only one is IV and according to the protocol, it's only 2x/week every two weeks. That is VERY manageable. Let's hope it does the trick! The protocol does (right now) call for 100 more weeks (yes, two years) of chemo but that is all subject to change based on MRI results. Anyway, Dr. Wolff sent us a copy via email and sent a copy to Dr. Khan for his approval. We will be scheduling a visit to MCV soon (basically as soon as I know exactly WHEN we return to VA). On that note, I have contacted National Children's Cancer Center about our return trip. They have helped us with some travel funding and said they could help with our return tickets (for Charlotte and one parent) once we had a return date set. She needs a letter from our social worker and the balls are in motion. We are aiming to fly home either late afternoon on September 1st or sometime September 2nd. We returned to the RMH around lunch time and Charlotte played with some of the kids while I read books. I have been very "lazy" concerning emails, romp n' roll, and all things virginia-related for a few days. I think my brain has decided that it needs a vacation. I do have some paperwork to do and emails to cull through, but they can wait. With our early morning, Charlotte petered out pretty quickly this afternoon and has been resting in bed looking at books for a bit. Can't believe it's Wednesday already! Tomorrow is a proton appointment at 10...and that's it. Then one more on Friday and it's time for the weekend. Happy Wednesday everyone...Rachel

Tuesday, August 18, 2009

Charlotte's next treatment steps

I apologize for the belated post. Better late than never, huh?Before I give Charlotte news, I need to give an update on our good friend, Reese. She is finishing the stem cell transplant from her 4th and (hopefully LAST) round of chemo today. Hooray! She is doing very well and we are so happy for their family. Keep the positive vibes flowing for clear MRIs from here on out!Now on to the princess:Monday was busy with an early morning at the clinic for labs. They didn't have time for the doctor to see her, so we were sent from there to proton for radiation. She went in relatively on time. When they're running 30 minutes late at 10 AM it doesn't seem nearly as torturous as 30 minutes late at 2:30 PM! While she was getting her treatment, I got a call from the clinic that her hemoglobin levels were up over 11 and that she would NOT, in fact, need a blood transfusion today. Good news! We got further good news in that the pharmacy came through with the insurance company and they agreed that they should pay for the oral topotecan. She has been very good about taking this medicine so now that we have the accutane and topotecan in oral form, I think the only IV medicine we will have upon our return to Virginia will be the Velcade (the new drug). That is VERY good news. We meet with Dr. Wolff tomorrow and I am hoping that he has some kind of rough draft of her new protocol. I can't begin to tell you how well she is doing. She's pooping regularly (without "assistance" from meds), she's eating a good amount and not losing weight (still no veggies or multivitamins but I'm not sweating it), and she's FINALLY getting to be social again. After proton, we took the shuttle over to the main area. We went to the cafeteria for lunch. Charlotte is the only kid (or person for that matter) that I know who can take almost 90 minutes to eat a small bag of Cheetos! That is what she did. Very slow and deliberate. Sometimes I wonder if her lack of nausea is helped by the fact that she is such a slow and dainty eater. Whatever works is what I say! I needed to make a deposit at the bank (it was close by) so we headed out for a walk. After the walk, we decided to stop at the coffee shop on the first floor and wait there for the shuttle. It was WAY too hot to walk home and I was spent. While we were waiting, Charlotte said she was hungry again and noticed a shelf full of bagged goodies like nuts, gummy bears, and yogurt covered pretzels. Those pretzels really caught her eye so I spent almost $5 on a large bag of yogurt covered pretzels (anything for her, right?). Well, I went to get in line to pay for the food and Charlotte proceeds to go up to complete strangers, saying hello and saying, "My mommy is going to buy me some pretzels! I said please and she said yes!" Too cute. The other adults were enthralled. I turned to the guy next to me in line and said, "Yeah, she's a really shy kid. We're trying to work on that." He cracked up. It also helped that yesterday she was wearing the "outfit" that her aunts bought her while they were here last weekend. The tutu is positively adorable on her and she got great second looks everywhere she went. I will be sure to attach a picture although I will warn you that she wouldn't let me "take" her picture all day (the paparazzi drives her nuts) so I never got a great angle. You can still get the idea. There's an additional photo (with hat) in the photos section. We'll work on getting one with the "full ensemble" that includes jewelry and sunglasses!After we got home, we decided to watch one of her videos in the TV room and then just hung out upstairs until dinner time. Dinner was very good again and we had a lovely time hanging out. Charlotte played with some of the kids and I got to talk to a few parents where we commisserated about the surreal existence of having a kid with cancer. Today was just a proton appointment. I walked to the proton center but we rode the shuttle home. We were home by noon! The afternoon has been full of play and reading books and laundry and lacing and just a nice bit of activity (not too much, not too lazy). Tomorrow is a VERY early appointment. We are supposed to be there at 7 AM! Charlotte (and I) have gotten so used to later appointments. This will be kind of a challenge. I will let Roger tell you about his adventure on the trip home from TX. It was somewhat eventful but I'll let you hear it from him.

Sunday, August 16, 2009

Sgt. Mommy, reporting for duty

Sgt. Mommy, reporting for duty. I got in Saturday after working some fabulously fun classes at Romp n' Roll in the morning. The flights went smoothly and my Ground Angel was right there to pick me up as I came out of the terminal. I arrived at RMH and while Roger had noticed me, Charlotte didn't. She was sitting on one of the couches in her adorable pink sundress and new cowgirl hat. I sidled right up and sat down without saying anything. It still took her a minute to realize who was sitting next to her. When she did, she smiled at me and handed me the sugar cookie she had been eating, saying, "You can have this, Mommy!" SWEET! Soon after that, Merrilee arrived to babysit and Roger and I went out. We didn't do much of anything. We just went down to one of the shopping areas near the medical center, sat at a diner with some tea and drank and talked. Even though we get to talk on the phone almost every night while we're apart, I have found that this time together on our Saturday "layovers" has been a good way for us to decompress and process our emotions and events during the time apart. I have said it before but I will say it again: I feel so lucky that Roger and I have a very strong marriage because I don't think we would have gotten this far without each other (and our love for each other). It also helps that I think we have approached this crisis in our lives in relatively the same way. We're not always in the same place at the same time, but I think most of the time we can really see and understand where the other person is coming from. That helps a lot.After our chat, we went over to the Chocolate Bar again (that place is DIVINE). I had a chocolate covered graham cracker and Roger had a chocolate covered Nutter Butter. They also have chocolate covered twinkies, chocolate covered cereals (like cheerios and golden grahams) and chocolate covered fruit of all kinds. It's paradise!! We relieved our sitter (thanks again, Beasley family!) and put Charlotte to bed. That didn't really happen till after midnight. In fact, I think I was asleep before she was (just one more book, Daddy!!!) but we all slept in this morning. I made breakfast downstairs and then we headed out on our adventure. Today we decided to experiment with the metrorail. We walked to our closest station (about a mile from RMH) and then rode the line towards downtown. It's just one line (north and south) but it intersects with bus stops and other public transportation to create this pretty complex and efficient system. We were able to see many aspects of the downtown area on our ride to the end. Then we exited the train and went exploring. Thanks to the iphone (and a really cool app called Around Me) we found a park near Minute Maid Stadium (where the Astros play) called Discovery Green. According to Wikipedia, the park was built last year and has a water feature (fountains the kids can play in) a playground, a small pond with radio controlled sailboats, and a cafe. It was very hot so the fountains seemed nice but, of course, Charlotte couldn't get soaked because of her central line. She and daddy waded in just a little bit (enough to get their feet wet) and then we went to the cafe for lunch. The lunch was on the pricey side but very yummy. They had a Kobe Beef Hot Dog which, if you know anything about Kobe Beef is (as Roger says) kind of like making a Lobster Hot Dog. Seems kinda weird to put meat that good into a hot dog...but whatever...We were excited to see that the restaurant used compostable and biodegradable plastic containers to serve the food. Very environmentally conscious of them!I had a salad, Charlotte had a milkshake, and we shared some sweet potato fries. Then it was about time to head back to the metrorail. We exited around the zoo and took a different route back to RMH. Then Roger showered, packed, and we got ready to say our goodbyes. Overall, Charlotte is doing great. I really can't expect too much better. She is very pale and it is obvious that she will need the transfusion we have scheduled for tomorrow. But she is eating, pooping, and she is the most social around other kids and adults that I have seen her in weeks. We met a girl named Rachel on the playground today and she thought it was the funniest thing. She said, "Mommy, she has YOUR name!" She's the second "Rachel" we've met (besides me) since we've been at RMH so it kind of rocks her world.I don't remember if we've given this "shout-out" yet, but a HUGE thank you to Good Shepherd Lutheran Church in Morristown, TN. This is Roger's dad's home church (The "Bonitas" to those of you who follow this blog regularly) and they held a pancake breakfast in Charlotte's honor that has raised what should be almost $3000 once all funds have been matched by Thrivent, etc. Much thanks and many blessings!It is very nice to think that we are in the home stretch of radiation. I am optimistic that we will work out all our insurance troubles this week and that we can weather these next few weeks with minimal trouble. Then it will be home to hopefully a less stressful regimen. I know we won't be done with treatment, but I am very hopeful that the worst will be behind us. Let's start getting that Disney trip planned, eh?

Saturday, August 15, 2009

Riddle me this, Batman...

"Riddle me this, Batman..."Why would Humana One, our illustrious insurance company, pay for IV topotecan treatments which require a visit to the clinic, supervision by at least one medical professional, and the actual drug which costs well over $1000 just for the little package they hang on the pole (not to mention all the medical waste created when tubes, swabs, even the covering on the table, all have to be thrown away) and then refuse to cover the little liquid oral syringes manufactured right here at the hopsital, which we can do at home without supervision, and which costs about $800 for 14 days worth (and all we throw away is the little syringe)?Well, that's what they're doing. If you're looking for places where the wasted money goes, there's one. I would think other policy holders of Humana One or even shareholders of the company might be interested to see that inefficiency.
I just paid over $400 for a week’s worth of the oral version (It’s certainly not a financial hardship thanks to all of you filling up CJ’s account) and Charlotte took it with very little trouble. Dr. Wolff recommended this avenue because he said, “You have to get out of town; you have to go to Disney World.” The oral version offers us a lot more flexibility all around. Going into the clinic everyday is an acceptable pain but being able to forgo the visit is a very attractive proposition. I’m sure they don’t cover it because it hasn’t been “approved.” I think they ought to approve it. Otherwise, I’m pretty sure we wouldn’t be able to maintain that outflow of cash for the long term and we’d have to go back to the IV route.
Charlotte doesn’t really give a hoot either way.The other, and much more serious insurance development: Humana sent us a letter saying that the proton therapy is considered out of network. This would be much more than a "convenience" issue and would normally have us extremely concerned except that we already got a coverage waiver (serial number and all) way before we even came out. Our angel in this matter, Yvette, is out of town, however, so she’s not available at the moment to check things out. Another person in the radiation dept. talked to me and after a little minor investigating, it looks like all the important information is still there in the computers so when Monday rolls around, hopefully this can get nipped immediately.
I groused at the person manning The House front desk this morning for turning out the lights on me while I was using the kitchen, twice. I told her it was a matter of being polite and all she had to do was ask me if it was ok or at least warn me she was going to do it. She, for her part was calm and tried to explain policy, electricity costs, yadda yadda yadda (of course I wasn’t interested in listening because I was mad) but after a short bit, I realized, again, that it’s really not that big of a deal.
Then after all that, Charlotte melted down because I had cut up the apple which was why I was using the kitchen area in the first place.
I see my irritation level rising slightly, which is weird because things seem to be going so well, but I get over most of it pretty quickly. Mostly because I’m not shy anymore about letting the offending party know that I’m irritated and then I let go of it right away. Keeps it from swirling around in my mind and making me stew over things. Makes far less bad energy in the long run. I could still use better judgment as to whom I aim my grousing.
So yesterday…Not a bad day again. Charlotte has started getting “the look” again so I wasn’t surprised when later, I got a call from the Children’s Clinic saying they wanted to give her a transfusion next Monday. Her numbers are still a little low but not going down but they wanted to make sure and I don’t think it’s a bad idea at all.
Rachel comes in tonight and Merilee Beasley is watching CJ for our date. No real plans this time. Just mingling auras.

A small yet massive victory today and it had nothing to do with poop.
A friend of my cousin Jeff’s, Larry, lives in Houston and we meet up today to hang out and get a little break from The House. At Charlotte’s request, we went to Chick-fil-a (surprise!!!). She ate like a champ and then told me she wanted to play in the playroom.
We got her hat, shoes, and brace off and she started climbing up the play “thing.” She got three tiers up when a boisterous older boy came whizzing down and bonked her on the head with his arm. No harm but lots of tears and I had to go up and get her down.
I held her at the table while she got herself together. She ate some more and to my surprise, she asked to back into the play area. I told her the big boys were still in there and she said, “That’s OK.” That’s my girl! She started back up the steps and I only helped her a little and once she go up high enough that I couldn’t contort myself any more, I asked one of the boys, David (pronounced Dah-veed), to just watch that she’s ok and he agreed (nice kid). I think he actually helped CJ onto the slide and down she came! It took a very long time but she was tenacious, determined, and never even hinted at giving up. That’s my girl.
I tell you, I’ve seen more and more of the old Charlotte every day (not wanting help getting off a couch, actually sitting up in bed on her own, trying suggestions I’ve given her as to how to bend over to pick things up, etc…) and today was a big glimpse of her. Warmed my heart.
Just though I’d pass that along. Thanks, Larry, for a fun afternoon.

Friday, August 14, 2009

A very good day

First off...very good day yesterday. Don't think I got irritated once that wasn't my fault. :-)Charlotte kind of slept in (9am) and I got some laundry done in the morning.We walked to the main hospital and caught the shuttle to the proton center. Walter Johnson the shuttle driver was on duty and I passed on what I had learned about his namesake. On the way back, I got to meet the famous Imelda the shuttle driver. She already knew CJ and knew about me from Rachel. It's a little disturbing when you're getting to know the drivers by first name.Everything was totally smooth at the proton center and we saw some of the regular crowd, Alex, Talia, and another new friend of Charlotte's named Halle. Halle is a kick! I understand she has had a very rough go of it post-surgery (she had a similar kind of PNET as Charlotte) and has been feeling very sick for quite some time. Well, just recently, like, this week, they finally found a drug that keeps her stomach settled and, according to her mom, she's a completely different kid (Where have I heard THAT before?). When I met her yesterday, she was vibrant, energetic and handing out food to people in the recovery area (that's OK) even though she was still NPO and must have been hungry, herself.
The treatment started at 10:30 and only lasted 30 minutes or so since they are done with whole head and spine and now will concentrate on spots in the brain. I didn’t go anywhere and read a little out of my newest acquisition, Inkhart by Cornelia Funk, a moderately OK movie was made of it but the concept is kind of cool so I had to make Aunt B buy it for me when I saw it in Costco! I didn’t realize there were three books in the series. Probably should have picked them all up.
Another nice thing about the proton crew is that they made these calendars for all the patients to cross off days until the last treatment and yesterday, I noticed they had hung up all the current calendars on the wall low enough so that kids could cross off their own days if they wanted. 12 treatments to go!
When Charlotte woke up, Halle came over to talk to her and Nurse Tye (I've since realized, SHE was the one who was handing out chocolates in the lobby THAT DAY!!!) had Halle bring Charlotte a huge chocolate muffin piled high with chocolate frosting and sprinkles. (I think Nurse Tye has Italian grandmother in her in that she doesn't seem to feel right unless people are eating something. She really seems taken with CJ)Charlotte usually only munches lightly on pretzels or crackers or other little snacks when she first wakes up but when she saw that frosting, she woke up pretty quickly! It was piled up on top and I'll bet there was nearly a quarter of a container's worth on there, no exaggeration. She pretty much polished off all of it and “helped” me eat the actual muffin. I'll admit. It was pretty darned good.Halle's mom was very much amused at her "reinvigoration" and let her run amok which nobody seemed to mind. I'm sure it's a very welcome change. I clearly remember the first couple days of feeling better after being whomped by the flu. It’s nice.Back to the main hospital on Imelda's shuttle and we (CJ) had lunch at Chick-fil-a. Yes, after eating that huge muffin, she was still ready to eat more and she did. It was so nice to have a "normal" lunch with my daughter. She even took off her hat and put it on the table. That's pretty big as my PSYCH 101 tells me she's feeling more confident.This has been slowly happening and I've seen her come out of her shell more and more, play with ("tolerate," more accurately) other kids, and do stuff like the art projects in the lobby. She even posed for, not one, but TWO pictures yesterday. One made its way into a frame colored by Mikayla.It was still pretty early and Charlotte was feeling tired so we headed up to the room. She didn't nap but chilled with nearly every book in the room and then a Sid The Science Kid video. (LOVE those!) I was feeling pretty toasted too so I tried to nap. CJ must have a problem with that because she constantly wakes me up to tell me that she finished another book or that the latest episode has ended and here's what happened...At least I got a little nap.Oh yeah, and she pooped! It had been 4 days and I was going to slip her a gastronomical mickey but before I could, she gifted me with a regal defecation!Another uncomfortable realization: It's bad enough to talk about CJ's bowel movements with everyone, but what does it say when one finds oneself discussing another person's "troubles" with that person, right alongside that person's family; and it doesn't seem weird to anyone there? Such is the surreal world in which we exist. People, kids mostly, routinely and unconsciously show each other their scars, compare central line ports and Hickmans, and talk about poop (grownups do it plenty, too). Back to PSYCH 101, it's probably a way to make things feel normal.
On a whim, we (me, Charlotte, Mikayla, and Halle) decided to have a Tinkerbell fest in the big TV room upstairs. The girls got pillows, blankets, and permission from their parents, I got the Tinkerbell movie (graciously lent to us by the wonderful Beasleys), and we headed up. But before, we did, I checked our mail and what should happen to be there but a package from the Schools family: a Costco gift card, some very nice cards and drawings, and a super cool (and timely) Tinkerbell “art portfolio” shaped like wings chock full of pencils, pens, markers, etc…It was a big hit and all the girls played with it while I flailed away trying to get the DVD player working (turns out I had the wrong remote).
I think there’s something of a power struggle brewing between friends of Charlotte. EVERYONE wants her to pay attention to them and that’s not a skill she’s developed yet. Rachel and I might have to run interference or set up individual playdates or something. I guess it’s a good problem to have.
We have proton at 10:30am again and then we’ll head over to the Children’s Center to start topotecan.
Updates as they happen (or at least in a day or so!)
p.s. I’m looking for singers for a song I’m doing at Rompy’s Summer Concert Series on Thursday, Aug 20. It’s one, moderately easy song and I need all parts. The rehearsal is Monday evening at 7:30 at Romp n’ Roll VA Center if you can make it. Part are already written out and it won’t take long to learn. Feel free to recruit! I wouldn’t mind a cast of thousands! :-)

Thursday, August 13, 2009

Update from Daddy and Mommy

I promise that when we publish the book, we’ll fix all the atrocious spellings and grammatical errors!
Yesterday, the New Mexico trio headed back to Farmington/La Plata but not before showering Charlotte with gifts, taxiing us around all over the place, paying for lunch, and revealing that they (Uncle Notsohairy actually) had caps made in purple and pink with Charlotte’s name stitched into them. Pink stitching on the purple hats and visa versa.
Aunt B has agreed to shave her head for a cancer walk they are doing in September but only if I can get Charlotte there for the event. Hmmm…MAN! I really would love to see that. We’ll see.
After we made our goodbyes and they left for the airport, Charlotte and I spent most of the late afternoon in the room with me catching a cat nap here and there and CJ watching videos and waking me up every time one section ended to tell me plot highlights. She got her legs back after a while and we headed back downstairs. Southwest Airlines was serving dinner so it was smelling pretty good down there.
We also met up with a new family with 3 boys and a 9-year old girl (the patient) named Mikayla. Mikayla has become a new bff (dear God, I didn’t really say that, did I?). She and Charlotte seemed to really hit it off. Charlotte doesn’t seem to mind the attention Mikayla gives her and Mikayla really seems to like looking out for CJ. It gave me the chance to get dinner, play a little piano, read a little, stuff like that. The rest of the family seems great too. Dad and the three boys all have their heads shaved in support of Mikayla.
We had a very early (7:30) appointment with the eye doctor Wednesday (yesterday) morning so I had to get CJ into bed as early as possible. It was still well after 10pm.
I slept like doggie doo doo. Not getting enough sleep this week. I’ll try to do better.
So I got her up early and decided to try to dress her in the Dora and Diego scrubs Grandma Bonita made for her. I understand she wouldn’t wear them earlier so I didn’t have much hope. I accidentally happened on the way to get her to wear almost anything: threaten to leave her in her nightgown to go see the Drs. She’s developing such a sense of “style” and fashion that going out in jammies is a complete fauxpas! She left wearing the custom scrubs, surgical cap and all!
I hadn’t actually walked the two blocks to the main hospital since I’ve been back so I forgot that it only take 5-10 minutes to get there which means we arrived at around 7:15 for our 7:30am appointment. Then we waited. The hours on the door said the office didn’t even open until 7:30. Why book a 7:30 appointment when it’s obviously never going to happen at that time? The staff was a little late opening the office so I was a little growly when I went in. Not too bad, though.
We eventually went into the office around 8:05. The “techs” got so much more out of Charlotte this time than the Dr. got last time. We even got dilating drop into her eyes with a minimum of drama. Then when the Dr. actually did come in, my theory was proven correct. CJ remembered her and really wanted nothing to do with her. We ended up having to hold her and force her eyes open so they could look at the optic nerves. That was pretty traumatic. In hindsight, I can’t believe I even allowed it let alone participated in it. Remember, this is the same Dr that asked all the bad questions last time. This time she kept saying things like, “Just do this one thing and we’ll be done.” And then she would do more, making Charlotte realize the next time she heard that phrase that the Dr. was full of crap. I finally had to be a bit rude and tell her in no uncertain terms not to do that anymore. I tell you, she knows a ton about the eye but not much about kids. I told Nurse Rhe about it and she said she’d check into it. The end result is that they left eye still has some very slight swelling around the optic nerve which may just be leftover from everything so no one is too worried about it right now.
There just has to be a better way to do that sort of stuff.
Next on the printed schedule was supposed to be proton therapy at 12:30 with a follow-up visit back to Dr. Wolff at 1:30. Hopefully you can see this wasn’t going to happen. Treatments are about an hour long with 30-45 minute recovery times.
With that in mind, I went into the Children’s Center hoping to get squeezed in before we had to leave for proton. That place is always such a breath of fresh air. Both Rhe and Nurse Carmen came out to talk to her and oogle her scrubs. Charlotte LOVES Nurse Carmen and I guess they have a little ritual conversation/routine they do getting back to the room. Unfortunately, my showing up early put Nurse Carmen at a disadvantage since before, CJ always got there after proton and they could talk about food. Carmen was quick on the uptake when I coughed out “NPO!” and she steered the small talk elsewhere.
Then Dr. Wolff came in and did a masterful job of filtering the crap (most of it mine). When he asked me what was new, what had happened lately, I started grousing about the eye doc and he quickly redirected my energy onto more constructive paths. “Ok, BESIDES the eye doctor, what has happened.” “OH! You actually want me to talk about Charlotte?!? I rarely have felt better about being scolded for being stupid. Especially as an adult. The decision was to start topotecan on Friday
I messed up the schedule yet another way because the blood draws/counts he would have used to decide what to do with the next type of chemo drugs would have been drawn by the proton center and since I hadn’t been there yet, there were no draws to study. Not to worry, we got blood drawn right there and then and we headed off to the proton center. We timed it just right and the MDAnderson shuttle was just starting to pull away when one of the volunteers (God bless ‘em!) ran out and placed her body down in front of the tires to stop the bus.
(OK, so I might be exaggerating just a little.)
The bus driver remembered CJ and I learned his name was Walter Johnson. He mentioned he shared a name with the old-time baseball player. Being more ignorant about baseball than I care to admit, I had no idea who he meant so, in perfect form, I googled him and when the bio came up, I felt even worse about my ignorance. Walter Johnson was arguably the best major league pitcher in history! 115 shutouts! Over 3,000 strikeouts!! Over 400 wins!!! Good name, I told Walter Johnson the shuttle bus driver.
We got to the proton center perfectly on time. I just walked right in, they got vitals real quick, and into the gantry we went. She was really tired already so no Frosty this time.
The other not so good thing was that when she was done recovering, I called The House to make sure the shuttle would stop to pick us up. They said the next shuttle leave at 2:30 and would be there to get us. Just to make sure I called about 2:30 to confirm and they said, yes, you’re on the list. We’ll about 3:30 I called and they had somehow forgotten me. Grumblegrumblegrumble. So they called a cab for me and I took a $4.00 ride. Not too bad. I got over my ruffled feathers pretty quickly.
The rest of the night was pretty standard…CJ read books in the room while I dozed here and there. We went back down and Mikayla was there. FREEDOM! Even if to eat in a smidgen of peace. CJ got her appetite back and devoured a bunch of animal crackers, two cups of Mandarin oranges (one of which had her accutane in it), and three slices of turkey coldcuts.
Then up for Madagascar 2, books, and bed.
So that’s where we are. Tomorrow’s proton appointment is blissfully scheduled for 10:30am!

Take care,


Well, I'm not exactly sure how things are out in TX but I know that I have had a GREAT day.

It started early with an 8 AM appointment with Dr. Bitsko but we had to do some flexing with the schedule so that I could see him before I left again for Texas. I'd been having kind of a rough time emotionally since some of Charlotte's recent medical developments and I think coming home (and being by myself to ruminate over it) just makes things worse. Anyway, we had a good talk and he helped me get some perspective on things. Always very helpful and encouraging.

From there, I went to Divas for my SPA DAY! Thanks to the many people who helped make this possible, including Jackie, Meredith, Walter, Sherry, my parents, Becky, Tracy...who did I forget? Anyway, they got me a full day experience at Divas and I had a manicure, pedicure, facial, hydrotherapy treatment, lunch, and a one-hour massage. It was so relaxing and very nice to do something that was just for me.

I did actually go in to work for a bit (Thanks Annette for covering a few extra hours) and then met up with some old work friends for drinks and dinner.

So overall, I really couldn't ask for a better day. I really have work to get done that must get accomplished before I leave again on Saturday but I guess I will get there eventually. Big day at work tomorrow and then I'm on the 24 hour countdown again. Time is flying by and I guess that's a good thing.

So Roger is calling me so I must go talk to my family.


Rachel's day out

Well, I'm not exactly sure how things are out in TX but I know that I have had a GREAT day. It started early with an 8 AM appointment with Dr. Bitsko but we had to do some flexing with the schedule so that I could see him before I left again for Texas. I'd been having kind of a rough time emotionally since some of Charlotte's recent medical developments and I think coming home (and being by myself to ruminate over it) just makes things worse. Anyway, we had a good talk and he helped me get some perspective on things. Always very helpful and encouraging.From there, I went to Divas for my SPA DAY! Thanks to the many people who helped make this possible, including Jackie, Meredith, Walter, Sherry, my parents, Becky, Tracy...who did I forget? Anyway, they got me a full day experience at Divas and I had a manicure, pedicure, facial, hydrotherapy treatment, lunch, and a one-hour massage. It was so relaxing and very nice to do something that was just for me. I did actually go in to work for a bit (Thanks Annette for covering a few extra hours) and then met up with some old work friends for drinks and dinner. So overall, I really couldn't ask for a better day. I really have work to get done that must get accomplished before I leave again on Saturday but I guess I will get there eventually. Big day at work tomorrow and then I'm on the 24 hour countdown again. Time is flying by and I guess that's a good thing. So Roger is calling me so I must go talk to my family. Rachel

Wednesday, August 12, 2009

Stand By for Update...

Just want to address concerns that I haven't updated today. If you have Facebook, you'd know generally what's up.


Working on an update right now. Stand by...

Tuesday, August 11, 2009

An Update

Very good day overall yesterday.

Charlotte slept in a bit and, when she did wake up, took her accutane in the morning with only a minimal of drama. It DID take a little piece of chocolate to seal the deal but you know what we say about chocolate...

Our appointment for the "weekly see" with Dr. Mahajan was at 11:30 so the New Mexico contingent came by right at 11 and took us over. Aunt B came into the exam room with us and Uncle Ted and Aunt Lynn stayed in the lobby. Rachel had drawn up a small list of questions/concerns to cover including what chemo drug to have CJ on after the 2 week regimine of accutane ends (today). It's obvious that Dr. Mahajan and Dr. Wolff don't see entirely eye to eye so decisions are made with a certain amount of blood loss. The proton beam protocol is still so new and some of the chemo agents have been out such a short time that they are in the dark about many of the radiation/drug interactions. The worst part is when Dr. Mahajan says, "We just don't know." It's honest and makes me understand their hesitation but it's still an urgh. So I guess I'll be the squeeky wheel today, trying to get someone to make a decision because what is completely unacceptable is Charlotte NOT taking anything because they "just don't know." Dr. Mahajan reiterated what I've heard many of her team say about thinking "outside the box" but I think whenever they look outside the box, they feel like they're flopping around like fish outside the aquarium. Very intelligent, well educated, and highly compensated fish. Fish who drive BMWs and Mercedes 700 class sedans!

We also talked about possibly squeezing the last treatment (which is on Monday, August 31) into the week before so we might be able to come back that weekend. I’m pretty committed to CJ getting all of her treatments so just lopping the last day off is not an option for me. Dr. Mahajan said they could possibly do two treatments on one day but that would be two happy juice sessions which would be pretty hard on her. Something else for her to ponder.
Overall, she was pretty happy with Charlotte’s progress.
After the “weekly see” we went back out to the lobby to wait until they called us for the treatment. The appointment was supposed to be at 1:30. At 2:10 or so, I finally asked one of the medical professionals to get me an update. Apparently, it was either a bit beneath her or she has a shorter memory than me because after she went into the back for a bit, she came out, walked right by us, didn’t acknowledge us, and went through another door on the other side of the lobby. Finally, I saw Trish from CJ’s team walking by and grabbed her. She went back and it must have been time because she and another nurse both came out to get us. It was 2:35. CJ wanted Frosty sung which I guess has been something of a rarity the last couple weeks so they were happy to oblige. Any excuse to hear CJ do her famous “STOP!”
One humorous observation is the occasional nurse/doctor/technician who just obviously doesn’t feel comfortable singing with the rest of us. Yesterday, one nurse actually tried to separate herself and stand all the way across the room near the door. I DON’T THINK SO! Lyrics were thrust into her hands and she at least gave it a go. Once CJ gets into the gantry, she’s a queen. Maybe that’s why they’re behind so often. I’m sure they treat all their patients that way.
After handing over CJ, we went out to get lunch. I tried to navigate but I ended up making us drive 10 miles to go 2. We ended up driving through the medical center to go to Chipotle (your choice of pronunciation) just down the street from the proton center. Mmmm! After not eating much all morning, it didn’t take me long to polish off the entire burrito.
CJ had just come out and was sleeping in the recovery room when we got back. Aunt B and I had a great little “small talk” conversation waiting for Charlotte to wake up.
Here’s an Awww moment…I pick on my sister quite a bit. I’m the little brother, it’s my job. But I’ve said it before, Becky quite often gives me fresh perspectives on things and I’m sure she usually has little or no idea she does it. My brother Vance does that too but he’s much more obnoxious about it! ::-) While I’m here, I should also talk about Uncle Terry (Ted, Tedricks, Pieface…) and Aunt Lynn (Lynnard). They’re sister and brother too…not in that order…then again… I admire them both very highly; mostly for how hard they work and their dedication to the family. The whole family is that way. My mom was pretty formidable when it came to defending her kids and my Aunt Moreen raised two pretty awesome kids as a single mother. My Aunt Debbie passed away relatively young and dealt with kidney transplants, dialysis, needles, and all the typical medical indignities. Hell, Grandma Jay is still plugging along in spite of a stroke she had several years back. She is one tough bird! It all makes my family pretty strong. We’re quirky but strong.
Back to our story…Charlotte work up slowly and was kind of surly until we got back to The House and got some Chocolate milk into her. She perked up after that and then promptly peed on me. She was sitting on my lap and her diaper must have been more full than I thought so all of a sudden I felt to wetness! Not too much of a mess and it was a great excuse to get her into one of the MANY new outfits the NM contingent got for her. She was pretty damned cute in the new pink dress.
THEN it was off to Costco for the traditional pizza and ice cream. I just wanted to get dinner but Aunt B and Aunt Lynnard kept finding stuff they or we had to have. I don’t mind. I got the second season of Flight Of The Concords out of the deal!!!

Oh yeah, I found out that they were trying to get us a limo for our date night but the Tim McGraw concert at Reliant Stadium snapped them all up. What a great thought. Thanks guys!

Charlotte was definitely feeling better. We got pizza and after I took off the cheese and scraped off plenty of sauce (real and imaginary), she ate more than her half of the slice. Costco slices are huge! She also ate all the ice cream I gave her and finished off a good handful of animal crackers before bed. She even took all the accutane as long as I put drops of it on her animal crackers. Go figure!
Need to mention that to the nutritionist at our appointment this morning.
Then she proceeded to stay up until 1:30AM!!! What did Aunt B do to her?!?
Time to get her up. May not be pretty!

Monday, August 10, 2009

Transition Update

No, your eyes are not deceiving you. The time-date stamp is correct. It's 1 AM...

My flight out of Atlanta was delayed (I guess due to that line of thunderstorms crossing the US) so we left Atlanta about the time I should have been landing in Richmond and landed in Richmond at midnight. And now I need to wind down before I can go to sleep.

Roger's and my "crossover" was very good. Aunt B, Aunt Lynn, and Uncle Terry arrived early Saturday afternoon and we made a grocery run and got some lunch while we waited for Roger to arrive. Charlotte was very amusing. She walks around with her baseball cap slung so low over her face I don't know how she can walk without bumping into anything. But somehow she manages to hide her eyes AND not walk into anything. It's funny.

When daddy arrived, she steamrolled to the front of RMH and attacked him with gusto. She missed her daddy! We did some visiting and then I swept Roger off on our date. To the Melting Pot!!! We hadn't been to the Melting Pot in a long time (it's definitely a special occasion thing for us) and I like it because the "slow food" thing and intimate atmosphere really makes for a good place for conversation. We talked a lot about all kinds of things...but mostly Charlotte. It was a great meal and a great date.

We relieved our babysitter around midnight only to find Charlotte still awake (!!!) [We're going to have to rethink hiring that babysitter again...HA HA!!] but she fell asleep soon after we got back. We all slept in on Sunday and then met up with the rest of the family for brunch at Jason's Deli. When the NM crew arrived for lunch, they were all wearing pink and purple with coordinating pink/purple baseball caps that had "CHARLOTTE" embroidered on them. Too cute! Charlotte was wearing her brand new pink BALD CHICKS ROCK shirt (thanks Megan!) and her light purple skirt and purple Tink cap so I think the folks at Jason's Deli thought we were holding the inaugural meeting of the Charlotte Fan Club. It was great.

After lunch, we went to the Gymboree next to Jason's and the Aunties proceeded to spoil Charlotte by buying her an adorable outfit complete with accessories. We also found a very cute cowgirl hat that actually met with the Diva's approval. Pics to follow, I'm sure. The day was topped off with a trip to the chocolate store across the street. Then we headed back to RMH to hang out until my Ground Angel came to sweep me away to the airport.

So I'm back in Richmond. I have work to do and mail to go through.

But first I must sleep...g'night.


(Just read Rachel's post AFTER I posted this one. We keep doing that! :-) )

Pretty good couple of days. Aunt B, Aunt Lynn, and Uncle Terry came in from New Mexico on Friday and were promptly pressed into babysitting service. Daddy came in Friday night and Mommy surprised him with the Melting Pot! It was very nice to just sit and talk for a while. We talked about Romp n’ Roll, interesting things we had heard on the news, and, of course, Charlotte. Lots and lots of Charlotte.
Charlotte has been doing pretty well even if her head now has a Marine, “jarhead” haircut with a soul patch on the back. I’ve noticed her attitude seems much more “Charlotte-y.” Not always good (she gets very irritated by the smaller kids who always want to be around her!) but much more normal.
We went out to Jason’s Deli for lunch yesterday and that was just awesome. Mommy and Daddy absolutely LOVE that place. Then we went to the Gymboree children’s clothing store next door and it was hard to keep Aunt B and Aunt Lynnard from buying out the place! They got all kinds of cool stuff for CJ and most of it was on sale, which is always good. One of the women working there was great with Charlotte and even took down the caringbridge information so we guess we’ll see her here eventually.
Next we went to the chocolaty goodness store across the way and as we were walking in the door, Charlotte started our family mantra, “Chocolate makes everything better!” Needless to say we were very full by the end of THAT excursion.
We went back to The House to get Mommy ready for the trip back to Richmond and, again, Charlotte was beautifully Charlotte. She loves her new lacing animals but it wasn’t long before she asked to play with Daddy’s shoe laces!  We found out later that Daddy is actually known as “The man with one shoe” among the kids at The House!
Mommy got off to the airport fine and CJ actually threw her kisses without prompting as she got into the Houston Ground Angels’ volunteer’s car (thank you again, HGA!). That's kind of a big deal. Her flight from Atlanta to Richmond got delayed so she didn’t get home until way late! But home she got. (huh?)
Daddy pulled out the guitar after Mommy left and entertained the kiddies for a bit including a set of twins who are new to The House. Only one is in treatment. Cute as all get out! We also met another new family had just who moved in. The daughter has a rare (it’s all rare) type of bone cancer in her hip. Charlotte really seemed to warm up to her so maybe that’s a relationship worth cultivating. She had a spot on her lung as well but it’s now gone and she’s cleared for proton! Yeah for good news!
Daddy has a lot to say about recent developments in his head and he’ll pen that epic when he gets it mostly straightened out but for now, this will have to do. Call it the “Transition Update.”

Happy Monday!

Friday, August 7, 2009

Another Good Day

More FUN facts about proton radiation therapy:

1. Protons are injected via a vacuum tube into a linear accelerator and in a few microseconds, the energy equals 7 million volts!!

2. The energy increases to 70-250 million volts which allows the beam to enter the body at various points.

3. Protons move through a series of magnets that shape, focus and direct the beam.

4. At maximum energy, a proton beam travels 125,000 miles per second (or 2/3 the speed of light)!!!

5. From the Hydrogen canister to the patient, a proton travels 313,000 miles!!!

And we thought the trip from Virginia to Houston was far!

Another good day. Today started out early because of our check-in at the clinic with Dr. Wolff. He is very happy with her progress so we are down to 1x/week checking in with the radiation oncologist and 1x/week checking in with the the oncologist. Plus the daily proton treatments. We will discuss further chemo next week and he is going to begin working on her plan for when we leave and go back to MCV.

The hair just keeps falling out but in typical Charlotte fashion, it doesn't seem to bother her. She was really hungry when we got out of radiation today so we stopped at MDA for a snack (cheetos and apple juice) and then headed back to RMH. I cleaned our room and did some laundry and Charlotte was actually pretty social today.

My friend Kim sent her a farm animal lacing set and she is LOVING it. A good replacement for those shoelaces. Her OT practice is going very well and today she spent a LOT of time lacing and unlacing the horse and the pig. The other kids were really interested in what she was doing too and we had a bunch of the RMH kids working on their fine motor skills. I'll just hang out a shingle and open a clinic here.

The evening was fun because the University of Miami Alumni
Association (Houston Chapter) hosted an ice cream social for the kids here at RMH. Got to meet some fellow 'Canes (none of whom went to school during mine or Roger's tenure). Lots of recent grads. Charlotte ate a LOT of ice cream (chocolate in a pink cone with sprinkles!! and she socialized with everyone.

By the way, she keeps telling everyone "I have two boyfriends...Larson and Wyatt." Depending on the day, she changes who her "favorite" is. Of course, if anyone asks if she has brothers or sisters, she tells them that her two "brothers" are also Larson and Wyatt so I guess she's a little confused. I get lots of weird looks when she says she has 2 brothers but I say she's an only child. She also says she has "two girlfriends" but doesn't say their names.

She also has developed this adorable habit of getting my attention by saying "Tweet Tweet mommy!" That means she wants to tell me something. She's my baby bird!!

So we are settling in for the evening and getting ready for the family to come tomorrow. Hooray! I know she will be very happy to see Daddy and we are looking forward to the visit from Aunt B, Aunt Lynn, and Uncle Terry too.

OH! I learned a very good thing tonight: proton therapy patients get to stay at RMH for up to 60 days before having to vacate so we won't have to worry about appealing for more time or finding another place to stay. I also talked to one of the other moms whose kid is getting proton radiation and she said that their last treatment was supposed to be on a Monday but they are "concentrating" his last 5 treatments so that they can finish on a Friday. I'm going to have to ask about that as her current schedule has her finishing on a Monday. It would be really nice to finish on a Friday and spend the weekend packing up for home...

Lots to do and must rest too (hey, that rhymes).

Happy weekend, y'all!


Thursday, August 6, 2009

Facts about Proton Radiation and an Update

Some fun facts about Proton Radiation:

1. The first attempts to use proton radiation for cancer/medical treatment began in the 1950s but it was only in the last decade that it has become possible to develop proton beam facilities in conjunction with established medical centers.

2. Radiation is delivered through large gantries. Each gantry weighs 190 tons, sits three stories tall, and is 35 feet in diameter.

3. 2/3 of the proton therapy center is build below ground level. The walls are 8 feet thick and 50 feet high. A 20-story building could be constructed with the amount of concrete poured for the proton therapy center (and it's only 3 stories tall!).

4. The equipment for the machinery weighed 1600 tons when it arrived from Japan at the Port of Houston and it took a 31-truck caravan to bring it to the construction site.

On a more personal note:

She's had a good day. She did start losing her hair today. Lots of little hairs on the pillow this morning when she woke up. It's falling out in little bits and clumps, and there is obviously not a whole lot to fall out anyway.

The major issue of the day seems to be getting her accutane prescription filled. For those who do not know, Accutane is usually an acne drug and it is HIGHLY dangerous to unborn babies. Causes very severe birth defects. For that reason, any female of childbearing age who is on the drug must be on TWO forms of birth control AND must take a pregnancy test each month. In order to prescribe the drug, physicians must be registered through this system called iPledge and you can't get the prescription except through an approved provider. Furthermore, as a patient you have to register on this iPledge site. If you're of childbearing age, you have to take a test so that they know that you understand the risks of pregnancy, etc. Obviously, we don't have to do that for Charlotte but we do still have to follow all the other rules. Well, we ran into a few glitches trying to get her prescription refilled here:

Glitch #1: The prescription was originally written in VA under Dr. Khan so in order to transfer the prescription and have Dr. Wolff write the script, I had to go on to the iPledge site and transfer to Dr. Wolff as my primary doctor. It took us forever just to figure out that we had to do this.

Glitch #2: When Dr. Wolff went in to approve me (well, Charlotte) as a patient, he couldn't find her in the system. We worked on this all day (in and out of treatments) and while the system kept telling me my application was in process and awaiting doctor approval, Dr. Wolff couldn't seem to find Charlotte as his patient waiting approval. We were lost in cyberspace. It only took me coming back to the clinic after radiation and both of us getting on the telephone help line with the iPledge folks to get it resolved.

Glitch #3: I took the prescription to the MD Anderson pharmacy to get it filled. At this point, it was after 4 PM. They said if I wanted the prescription compounded into liquid form (I did) it would take almost 2 hours. So we headed back to RMH to wait. Meanwhile, Charlotte ate some dinner and we've been relaxing. I go to call the pharmacy about quarter to 6 to see if it's almost ready so we can walk back to MDA and the pharmacist tells me that she tried to call me (obviously called the home number which doesn't help much) and the insurance is not approving the prescription. No idea why since they approved it before. It may be because we are trying to get it compounded into liquid form. Needless to say, it will cost $300+. Basically, I don't care about the cost at this point, I just want the meds. She says, "Do you need this today?" and I said, "YES!!!". She didn't get her morning dose and I'm not waiting any longer to get this stuff into her. So she said it would be another hour...or so. Sheesh.

So we will be heading back over to MDA in a bit. At least the weather will have cooled a bit so we can walk. Fresh air and exercise will do us good.

Otherwise, everything is ok. As ok as it can be. Thanks for all the positive vibes and support we have been getting. It really means a lot. One step. One day at a time. That's all I can do. Dr. Bitsko called me this morning and we talked so that was helpful. One more day of treatment till the weekend. And two more days till we get to see DADDY! Yay!

Wednesday, August 5, 2009

A Difficult Day

"There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them." --Phyllis Bottome

It's been a rough day. Plain and simple.

First of all, it's hotter than Hades here. Heat index was WAY over 100 today and we spent as little time outside as possible. No walk, no exercise for me.

Her appointments went well. The clinic was VERY busy. The busiest I've ever seen it in the lobby (standing room only). They did get us in pretty quickly, though. Then we just waited for Dr. Wolff. Her labs look pretty good. White blood cells are low but everything else is looking ok. So as long as she doesn't get a fever, we're still good.

Had to run through some rigamarole trying to get her Accutane prescription renewed. Still haven't filled it yet but I should be able to do that tomorrow.

We left the clinic with JUST enough time to wait for the shuttle, jet over to the proton center, and go right into radiation. Second day running on time. We're going to get spoiled! And after today, her time bumps back to before 1 PM! Yay! That will mean (hopefully) earlier time slots and less time NPO.

We came back to the RMH and she has been watching movies most of the afternoon. She got a great care package today from Aunt Kimmie with some new horse figurines to play with and some new videos so she's in 7th heaven at the moment. Didn't eat much (one corn dog bite and some chocolate milk...that's it!) but she had a poopie. Second day in a row for that!

Now to the tough stuff. I got onto the MD Anderson website last night to check some reports. One of the great things about MDA is that all of her medical reports get posted online and we have access to it. We also have all her appointments and can cancel, reschedule, and request appointments as well as contact anyone on her medical team. It's a really great website. Anyway, I knew that Dr. Wolff had been able to compare the post-surgery (May 29th) MRI with the MDA (July 14th) MRI (finally) and had taken it to the tumor board on Monday. Low and behold, he had posted a report.

And I quote: "The images from May 29th and July 14th were compared and reviewed....Some of the tumor lesions which had been left behind after the surgery became smaller during that time but there were new contrast enhancing lesions and leptomeningeal disease which appears to be new. This has to be judged as a mixed response-progression."

So what that means in lay-person terms is that while it looks like some of the tumor left over from surgery actually got smaller (yay) there are new tumors/lesions forming and the cancer has most definitely spread to the spinal fluid (NOT yay). Dr. Wolff and I had quite the talk about this today. He is still confident that the proton radiation will help shrink the current tumors; however, he realistically does not believe that radiation alone will be enough to fight this. We are looking at a cancer that grows very quickly, very aggressively, and is starting to spread into her spine. Not good. He mentioned a new drug (Velcade) that is used as a chemotherapy agent with many patients who have resistant tumors and this will probably be an option after radiation. We will continue to push the Accutane and possibly Topotecan (we can alternate the two every two weeks) during radiation and then revise the protocol following radiation to include a new mix of meds (some of the latest ones and maybe the Velcade).

It is so hard to hear this. It is so hard to know that while some of this treatment is working, it may not be enough. This is a very tough battle. I have always been a very positive person. Those of you who have known me a long time know that I pretty much try to see the glass as half-full. Always try to put a positive spin on things. And I am stubborn. I rarely give up (to a fault, I'm sure!). But every time we get a report back on an MRI, I keep getting knocked down a peg or two (or ten). Hope is there. Faith is there. But it is a weak candle that threatens to be dowsed at every turn. Here we are back in the middle of the hurricane and my tiki torch is getting drenched.

Please keep the prayer cycle flowing. Please keep the positive energy up (for me and for Roger...and for all of us). And just understand that I may not be the happiest person right now. I live life one day at a time. No faster....Perhaps I will feel differently tomorrow. Today it's a difficult day.

Thank goodness I have an appointment booked with Dr. Bitsko already for my return next week. And my "spa visit" is next Thursday. Much needed, don't you think?

On a funny note, I called the MCV clinic today to try to get Matt Bitsko's email address and check in with him on this issue (I seemed to misplace his email address) and the person that answered the phone said, "That person no longer works here." WHAT????? was the only thing I could say. Since when? What's going on? I didn't recognize the voice or name of the person answering the phone but he said someone from the office would call me back with more information. I just about went into a panic attack. Well, I decided to call Matt's voicemail (I did have that number) and just as I reached it, my call waiting beeped and it was the clinic calling me back. The same person was on the phone and apologized saying that he had gotten confused and had misspoken. Holey moley! Don't tell a woman in crisis that her therapist is no longer available!!! That's just WRONG!

So I guess that's really all I have to report. Sorry for the downer of a post. If you need a laugh, just go to yesterday's and look at the "funny Charlotte sayings" post.

I will add one more that I forgot: Another "latest thing" is that when we go somewhere, she always picks what animals/toys she will bring (usually Mickey but sometimes one other item) but she ALSO decides what I get to bring (mom, you get to bring the tiger and the snoopy!). Oh, gee, thanks. While I'm not already schlepping around the portable DVD player, your favorite books, diapers, and all the other accoutrements and necessities, I need my own stuffed animals, apparently. Ha! I have told her that I can only bring one animal with me and that usually satisifies her. She now has a Sorcerers Apprentice Mickey that she calls "Wizard Mick" but he gets to live on MY bed. She is FUNNY I tell you!!

Ok, that is all,