Today, we're tinkering with the usual blog format. Rachel's dad, Kurt, has great news to share. And Rachel has answered some questions from her readers. (Feel free to post more questions in the comment box for Rachel to answer in the future.)
Kurt Kovach here. We heard from Rachel’s doctors yesterday and today regarding the pathology analysis of the bone and tissue that was removed during her surgery. The results are very encouraging. The edges of the removed tissue are "clear," meaning no cancer cells were found. And farther inside the tissue, the percentage of cancer cells that are "necrotic," meaning killed by the chemotherapy, is very high. Her doctors are very pleased -- and we're thrilled.
Q & A with onco girl:
What is your morning routine, and how much help do you need to do “little” things like get dressed and brush your teeth?
My morning routine varies a bit depending on what will be going on that day. To brush my teeth, my mom gets a bucket of water and puts toothpaste on my wet tooth brush. Then I brush my teeth like I normally would, but since I can't stand at the sink, my mom brings me a cup of water for me to rinse my mouth and I spit into the bucket. Then my mom helps me get washed up. Then we change my clothes. Thanks to my school principal, I can actually wear pants again. My principal bought a pair of large pajama pants at Walmart. She cut the seams along the inseam and she sewed velcro to the insides so they would close around the bar attached to my brace that keeps my hips aligned. While I have my breakfast, I watch Good Morning America, Regis and Kelly, and Rachael Ray to complete my morning routine.
You’re an upbeat person, but even you must have bad moods, considering what you’re dealing with. Describe the worst mood you’ve had since you got home, why you felt bad, and how you got into a better mood.
I've had my moments here and there. Nothing really stands out as the worst mood. When I get in a bad mood, it's mainly because I'm frustrated at the fact that I need help to do most everything now. After awhile, I remember that this is only temporary and then I feel better.
What exercises are you doing to strengthen your leg and keep your other muscles from getting weak? How often do you have to do them? Do you enjoy them – or not?
I do not enjoy doing my exercises but I know I have to do them or else my legs will not be as strong as they need to be. I have eight exercises that I have to do every day, twice a day. Because of the weight of the brace, the exercises are harder. Some of the exercises I do are ankle rolls, quad tightening sets, and leg lifts. I also stand with a walker, and since I can't put weight on my right leg, I hop several steps on my left leg.
Do you do any crafts such as drawing or sewing to keep busy?
I make jewelry to occupy myself. While I was in the hospital after my surgery, I made my mom a pair of earrings for Mother's Day. She just loves them.
Do you miss school?
I do homework that my teachers send to my home, and I work with a teacher when I'm at CHOP. But to be totally honest, I really miss going to school because I miss seeing my friends. When they're free, they come over to my house to see me. We also Skype with each other.
Since I haven't been to school with my extra-wide wheelchair yet, I'm not sure whether it will fit on the school's chair-lift. Kids who are in wheelchairs use the lift to get from one floor to another. I'm thinking about testing the chair-lift tomorrow because I'm going to my school for the Trike-a-Thon, a fund-raiser for the Make Some Noise: Cure Kids Cancer Foundation. It will be a big outing for me. I hope it doesn't rain!
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