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.

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