Huge post ahead.
Some bad, but not unexpected news: While Charlotte was in her neurocognitive assessment playing games with the two ladies (whose names I've already forgotten, sorry), I got to look at the latest MRI scans with Dr. Vats (Dr. Wolfe's colleague). We didn't have the post-3rd surgery scan for comparison but the tumor is definitely still there in bits and pieces and possibly still growing. I'm going on the assumption that it's growing.
Dr. Vats also said that there was evidence that it has spread into the upper spine (again, not altogether unexpected) although the computer he used to show me the scans didn't have enough resolution to pick up what he saw on his own computer so I didn’t actually see it. I’ll take his word for it.
Now, before anyone totally freaks out, it's certainly not good news by any stretch of the imagination but the proton radiation protocol has already accounted for the possibility and now we know that it was necessary to plan for head and spine after all. That starts next Tuesday.
Dr. Vats was still very positive and confident that we’re headed down the right path. He did say that he would bring Charlotte’s case before the “tumor board” on Monday to elicit opinions and also that he would explore the possibility of injecting chemo drugs directly into her spine via an LP once every two weeks, adding to Dr. Tye’s recommendation of “throwing the book at it.”
On a good note, CJ wowed them in the assessment with her vocabulary. They’ll get back to us with the official results of the testing as soon as they tally up everything. Dr. Vats was also happy with the recovery of CJ’s left side.
I’ve had several messages from people worrying about how I’m doing emotionally and all that. First off, thanks for the concern. It does mean a lot to me to have so many folks concerned about us.
I’m hanging in there. I’m nowhere close to thriving and I have my off moments but I feel like I’m dealing pretty well. I’ve been thinking very deep and hard about my/our situation and I feel about as focused as I’ve ever felt in my entire life. Crisis sure brings perspective down to a pinpoint, doesn’t it? Nothing else matters besides my daughter’s fight against the cancer. If I have any concerns for myself, it’s how I will deal with things after everything plays out (however it plays out). Different scenarios (best and worst) run through my head all the time but so far they haven’t distracted me from the here and now. I guess I’ll have to figure that out when I get there.
I can’t really speak for Rachel but I think she’s doing a little better. Today’s news didn’t help but she’s using her resources at home, MCV (mostly Dr. Matt), and within the circle of friends & family, and finding more solid footing. Romp n’ Roll is keeping her occupied (my turn when we switch) and Meredith orchestrated a day at Diva’s for her so that will help too! Anyone wanting to donate to that cause can send checks to me.
We will need support in Houston as the proton therapy and chemo kicks in and leaves CJ less functional. My dad has offered to come out as early as next Wednesday and stay for about a week. If anyone was planning to come out, we could use someone after that. Don’t ask me when we want you; tell me when you’re available and willing to come out between then and the end of August and I’ll plug you into the schedule.
The Beazleys have been fabulous and will continue to be. Merrilee is watching CJ tonight so I can go see Harry Potter (Brought my “Muggle” t-shirt and everything, just in case!) and they’re letting me borrow a car this weekend in the guise of having me take them to the airport tomorrow.
Now back to the important stuff, Charlotte. We went to the circus last night and although she liked the pretty horses and she got downright excited to see the elephants, she didn’t make it to the intermission. She was pretty mellow through the pre-show stuff but perked up when the lights went down. Unfortunately they were definitely trying to be Cirque de Parfait which didn’t work in such a large venue and they lost CJ pretty early on. The ringmaster was actually a pretty good Broadway-style singer from Houston who had been with the circus for a couple years now. There was a lot more song and dance stuff than I remember from the one time I saw Ringling Bros. before. There was a moderately silly Jets vs Sharks thing during the Act I finale but one thing really grabbed me. One group of clown “henchmen” came out bouncing on what I can only describe as innertubes with saddles. They did some very cool flips and such off and onto them and now I want one for my own. They also did the motorcycles in the ball trick but they kept adding more and more riders until there were 7 in there. I can’t for the life of me figure out how they all fit in there without knocking each other’s ankles.
Throughout Act I, Charlotte became more and more clingy and finally just climbed onto my lap facing me, put her head on my shoulder and zonked. She slept through the extremely loud finale so I just grabbed everything and headed out when the lights came up for intermission. I was quite the site heading up the stairs with CJ’s unconscious body in one hand, the stroller in the other, and the backpack on my back. At least she was awake on the way down to the seats.
I was going to just call a cab and go back to The House but I just happened to run into the manager of the outing and she called the bus to come get us.
A nice side line, the bus driver told me her story as we rode back to The House last night. Her son was diagnosed with leukemia back in 2000 and spent the next 4 years being treated at MDAnderson. She lived in The House for 4 years while he was treated. She gave up everything to be with him including a successful business and most of her friends and family back home. He’s now 18 and going into college and she now drives the bus for The House. She feels such a connection to the families here that she’s always willing to come in on her day off to help or cover shifts or whatever it takes to make the families’ lives just a little easier. Yet another inspirational story out of a sea of them.
So keep the positive vibes aimed at Houston (with a little left over for Richmond). We’re keeping up the good fight from our end.
Love to everyone,
Rog, Rach, & CJ
p.s. I'm using Facebook for photos and Caringbridge for updates (mostly). If you don't have Facebook and want to see pics, please have someone show you. I don't want to fool with photobucket or the others.