Day 0 of Consolidation ---long entry (aren't they all?)
Ok, first of all, after reading through the messages in Kendrie’s guestbook, I think I have a moral and legal obligation to clear something up, as it seems my character has been unfairly and unjustly besmirched. Apparently, many of you who I *thought* were my friends seem to be under the misguided impression I am some kind of selfish, evil, breadstick-snatching ogre. That simply is not true!!! For the record, when I so innocently helped myself to one of Kendrie’s Pizza Hut breadsticks last week, inciting the temper tantrum to end all temper trantrums, the child had a double-family-sized order sitting in her lap! Do you know how many breadsticks that is? TWENTY! 20! Two-Zero!! And I took ONE measly breadstick!!! So, although the 4-yr old in the car took it as a blatant display of greed on my part, you grown-ups out there should know me better than that! (and hey, if nothing else, my 3 am shifts in front of the microwave heating up mac & cheese should ensure all of you that the child is NOT going hungry, ha!)
So, for those of you following along and wondering why I didn’t update the journal after Kendrie’s appointment last Friday, it’s because the appointment was postponed until today due to scheduling problems around the Thanksgiving holiday next week. We are now on an “every Tuesday” schedule for this next phase (Consolidation) and it wasn’t any problem at all, except it made us the lucky recipients of four BONUS days of Dex. (The Steroid from Hell, for those of you fortunate enough to have no personal experience with it.) Otherwise, we made it through the rest of Induction without complication, and now move forward to Phase II; Consolidation.
As a brief overview (anyone not interested in the dry, medical part of this journal entry, skip down to the next paragraph.) Induction (the initial 28 days, or 32, in our case, of chemotherapy treatment) is about killing as many abnormal white cells in the shortest amount of time possible and achieving a state of remission (no signs or symptoms, although there are still leukemia cells present). Kendrie achieved remission by Day 14, so she is considered an “induction success” and we now move on to Consolidation. Consolidation therapy consists of new combinations of drugs to destroy the cancer cells that survived induction, especially any that might spread to the central nervous system (brain and spinal cord) since those are places the cancer likes to “hide”. Since the CNS cannot be reached by oral or IV drugs, Kendrie will have weekly spinal taps with spinal fluid testing and methotrexate injections into the spinal fluid as a preventative measure. So those, plus her continued daily doses of oral drugs at home, are what the next 28 days should hold for us.
Today’s clinic appointment went markedly better than previous ones. She still cried, but settled down much more quickly and even agreed to let Nurse Amy shine the light in her mouth. (sounds silly, but pursing those lips closed had been a HUGE control issue up until now!) She was also more receptive to the awesome Child Life Specialist, Miss Laura, and made a few art projects while we were waiting for our appointment time. I was thrilled to see her draw a picture of a sunshine happy face, and not some sick and twisted medical scenario, with Mommy strapped to a table and doctors and nurses jabbing needles and pins in her (my freshman psychology paranoia about Art Therapy coming alive!!)
Kendrie gained a total of five and a half pounds during Induction, which doesn’t sound like much until you do the math and realize that is over 15% of her total body weight. I don’t know if the thought of putting on 15% of your body weight is any big deal to the rest of you, but it would definitely bump me out of the “pleasantly plump” category and right up into “wow, even my fat clothes aren’t fitting anymore”! But best of all, her blood pressure was normal enough (well, after the Versed, anyway) that she could have her bone marrow aspiration done under general anesthesia. In between the rain, the Atlanta traffic, and the stupid cup with a hole in it from Steak and Shake that leaked chocolate malt all over my van, which meant I had to pull over on the shoulder of the road and clean it up in the rain, thank goodness we didn't get hit by an 18-wheeler or anything, but I digress -- we didn’t get home until 9pm, so it made for a long day, but otherwise went well.
I want to thank all of you who have been checking the website and signing the guestbook, please sign as many times as you would like; we love hearing from you! It’s great, also, to be re-connecting to friends we haven’t talked to in years. Kind of a crappy reason, but great nonetheless. I also want to say a specific thank you (sounds like I’m giving my Academy acceptance speech, doesn’t it?) to the two local groups here in Warner Robins--- the PK Contracting Wives, and the HOGS (Heart of Georgia Scrappers) who have been so wonderful to our entire family by bringing us meals, and diversions for all three kids. And especially to Nadine Moon, who is the first person to tell me she is donating blood in “honor of” Kendrie. That is a list I would like to see become very long (hint, hint!)
So, that’s it for today. Hope you are all having a great week as well!
Love, Kristie
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KENDRIE’S PERSPECTIVE:
TOP TEN WORST THINGS ABOUT INDUCTION THERAPY:
1. Taking Decadron and the way it made me feel. Taking Decadron for four extra days. Taking Decadron. Period.
2. Number of bone marrow aspirations to date: 5
3. Number of spinal taps (aka lumbar punctures) to date: 4
4. Number of doses of oral medicine at home, to date: 74
5. Number of needle sticks: a lot
6. Having so many people poke me in the arms and hands with needles before I had my surgery to have my port-cath put in my chest.
7. Having so many people poke me in the chest with needles after I had my surgery to have my port-cath put in my chest.
8. Losing my hair. My Sunday School teacher Ms. Ginger says God knows every single hair on everyone’s head. I hope in my case, he has been practicing his subtraction skills. My mom says it’s a case of “the sins of the parents” (whatever does that mean??? I’m only four, after all, am I supposed to know what she’s talking about?) because Mommy has been very, VERY vocal in the past about how much she hates that whiny brat Calliou and now I’m probably going to wind up looking like him.
9. Spending so much time in the car driving back and forth to Atlanta.
10. Band-aids. Any shape, any size, any kind. Need I say more?
11. Dad says my college fund is depleted by $94.68, the amount of money we spent on cheese pizza and breadsticks from Pizza Hut the past two weeks.
12. Oh, wait, this was a top TEN list, right?
TOP TEN BEST THINGS ABOUT INDUCTION THERAPY:
1. It’s over!!!
2. Achieving remission by day 14!!
3. Achieving remission, period!!!
4. Grandma McClung coming to visit us for an entire month!
5. Knowing that our family has single-handedly kept the employees of Pizza Hut, Kroger, Kraft Cheese, and Purell in business the past month (and think of the thousands more if you believe in trickle down economics!)
6. All of the thoughtful things people have done to show us how much they care.
7. Getting so many wonderful cards and phone calls from people everywhere.
8. Getting to eat whatever I wanted, whenever I wanted (mainly mac & cheese at 3am)
9. Making it through the entire 32 days with no fevers, no ER visits, and no more inpatient hospital admissions (after the one week stay at the time of diagnosis.) I don’t want to go back there anytime soon, no matter how nice those nurses are!
10. Did I mention that it’s OVER????!!!
Tuesday, November 18, 2003
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