Well, technically, it’s only Day 20, but I’m discovering that in the world of chemotherapy (or at least in our world of chemotherapy) “close” is good enough. The first time or two our clinic visit was bumped a day in either direction I panicked, but now realize going in a day early or late doesn’t seem to matter, and is sometimes unavoidable. It IS, however, very difficult on our wonderful military and scrapbooking friends who keep making plans to bring us dinner on our clinic days, when the days keep changing! (it’s fine with me, though, I’ll take a home cooked meal, especially home cooked by someone else, anytime!)
Kendrie had her final lumbar puncture (and received chemo drugs via spinal injection) for a while today --- no more back pokes scheduled until January 12th! (of course, the date will probably change, ha!) She tolerated this one very well. I think the 45 minutes she spent with the play-therapist this morning helped a great deal. That poor woman is sure earning her money with my child. As a lame attempt at a thank you, I took in bagels and cream cheese for the entire office. She slept on the way home and I burned an hour’s worth of cell minutes—--nice way to pass the time. You can tell the nap did her good because it’s now 11pm and she’s in the hallway, doing her Pele impression and doesn’t seem to be slowing down at all.
We found out today that Kendrie has been randomized to Experimental Treatment #3 of the CCG 1991 Protocol. **WARNING** This is the dry, boring, medical part of the journal entry that you might want to skip, but I put it in for the one or two friends who have made the mistake of asking*** CCG/COG (Children’s Cancer/Oncology Group) is a national group that consists of more than 100 hospitals (including Children’s Healthcare of Atlanta) that treat children with cancer. The CCG-1991 study is being done because the standard treatment used to treat ALL does not stop every child’s leukemia from coming back. The CCG-1991 research study will test whether experimental treatments work better than the standard treatment. (and yes, I copied that directly from the Informed Consent Agreement, but it made me sound smart, didn’t it??)
“WHOA!” was my first thought when approached by Kendrie’s oncologist about taking part in this study. “You are not about to give my child some placebo drug made of sugar and tofu and then sit back and wait and see if she recovers spontaneously!” I mean, I’m all for the advancement of medicine and understand the need for testing, but not at the expense of my child’s heath. Let someone else sign up for lab rat status, thank you very much. Then he explained to us that the experimental treatments in this study use the same drugs as the standard therapy, just in new combinations or at higher doses. The primary purposes of the study are to compare the effectiveness (rate of cure) and side effects of the different treatments. More drugs may be more effective, but they may also have more side effects. What made up our mind was the fact we can pull Kendrie off the study at any time and put her on the standard therapy. (plus the altruistic thought of helping kids in the future, blah blah)
The two primary differences in the three experimental “arms” of treatment are oral methrotrexate vs. IV methotrexate, and (1) delayed intensification phase vs. (2) delayed intensification phases. IV meth is considered more aggressive treatment, and (2) DI phases is considered more aggressive. Well, leave it to my over-achieving child to be randomized to the arm of treatment where she will receive BOTH IV meth AND (2) DI phases.
At least we will never have to sit back and worry that we didn’t try everything we could, right? I’m just going to hope that the side effects she might experience aren’t so bad, and that the extra drugs will help her kick some ALL ass in the meantime!
Nothing particularly funny or interesting happened today, so I’m afraid this isn’t a very entertaining journal entry. In fact, pretty damn boring. But in the world of cancer, boring is not always a bad thing! For a dose of good humor, check out this site: JULIANNA BANANA This little girl is battling the same kind of leukemia as Kendrie, and doing it in GREAT style! Her dad gave me permission to post her site address and I think you will all enjoy it. Or at least the friends who are as warped as I am, anyway! Go back and read her entire journal --- it is well worth it, I promise! I’ll post other sites as well from time to time, so you can see a few more faces of the many wonderful kids who all got the “crap-sandwich surprise” in their lunch box without asking.
Thanks for checking in and especially thanks for signing the guestbook. I get all warm and fuzzy when I see “old” friends dropping us a line, and I get so excited when I see new friends, too. I especially love the ones that ran across our site from “a friend of a friend” or another Caring Bridge site --- this truly is a wonderful, supportive community and I feel so blessed.
Take care, Kristie
WORST THING ABOUT HAVING CANCER TODAY: You know what? Today was actually a pretty good day!
BEST THING ABOUT HAVING CANCER TODAY: Well, at least my crazy-mom didn’t cut my sweater off with scissors again!