ONE YEAR AGO TODAY: I do not know what is wrong with this whiny child of mine but she is about on my last nerve. “Mom, my legs hurt …. Mom, carry me … Mom, my legs fell asleep” Good heavens, could the kid be any lazier??? I keep telling her that she has to walk … she’s four now, after all, and she will just stand there and fuss until I give in and pick her up and carry her. Good gracious, is she the biggest baby on the planet or what?
CURRENT: You remember when you were in college and you thought how much easier life would be once you were out of school and employed? Only once you got there, you realized how much easier life actually was in college? And how once you had a baby, you wondered what you ever did with all that free time before you had a baby? And then once you had a second and third baby, you looked at all the parents with only one measly baby and thought, “You guys just don’t know how easy you’ve got it!”
Blaine and I were having this exact (sort of) conversation this morning, when I mentioned to him that we are going to be out of town three of the next five Sundays. He, being a “yes, dear” sort of guy, couldn’t remember a single thing we had planned and I had to remind him: Camp Sunshine Day at Wild Adventures Theme Park; Camp Sunshine Family Camp Weekend; and the Light the Night Weekend in Atlanta. And the thought that suddenly ran through our heads was ….. “What the heck did we ever do with all our free time before Kendrie got cancer?”
We’ve only been in long-term maintenance one month, and already I don’t remember a time when we weren’t giving dozens of medications each week, on a demented “this one at night with no food and this one at night with food and this one at bedtime but half of the dose in the morning on Sundays only and this one after supper but before snack” kind of schedule. I counted for the first month: 87 doses of meds. Thank goodness several of them are pills we can give together. Throw in the Zyrtec and ointment Brayden is on for eczema and the amoxicillin Kellen is taking twice a day for his ear infection, and I swear to high heaven I could just have FLORENCE FREAKING NIGHTINGALE tattoo’d on my forehead.
Some days I look at Kendrie and think “I can’t believe we’ve been doing this for almost a year already” and other times I think, “I can’t believe we still have fifteen months to go!” Time is flying --- time is dragging. And I’m pretty sure that when it’s all over, we will sit back and think, “I can’t believe we thought we were busy when Kendrie was on chemo --- we didn’t know how easy we had it!”
But it’s certainly not all bad! Although I don’t miss our weekly trips to Atlanta, I have to say that I look forward to the monthly visits for a social reason --- it’s our chance each month to hook up with our chemo-buddy Catie and her mom Jenny, when Catie has her monthly chemo on the same day. This month Catie went inpatient a day early, so we had lunch with them in her hospital room. She is so cute and Kendrie just adores her! But it was also our chance to meet Mary Grace’s mom D.D., (who actually treated for lunch, and it was NOT purchased at the hospital cafeteria, let me tell you! She goes to what must be the neatest deli in Atlanta and Kendrie is still talking about her chocolate-covered cherry/Hershey kiss mouse with the walnut ears!) Mary Grace was diagnosed with a germ cell tumor only a month ago and I’m so impressed with D.D. for already being so proactive about meeting other moms and getting as much support as possible. As far as I’m concerned, getting together socially with these wonderful moms and kids will be the highlight of our Atlanta trip each month. (Kristin, next month we’ll have to arrange better with your schedule! And Regina and Tiffany, how far are you from the clinic??? You up for lunch some time?)
Oh, well, yeah, in case I forget, there’s also the whole “chemo” reason for going. Kendrie’s counts were fine, although her oncologist warned us that usually in the second or third month of long-term maintenance the counts will start to bounce all over the place as the body adjusts to the medications. Something highly technical about red blood cells living 90 days, so it takes that long to accumulate, blah blah. We’ve just been forewarned not to panic if it happens. But for now, Kendrie is still doing great. (whew!) She received her vincristine through her port and except for a few moments when it wouldn't flush and they thought they might have to re-stick her, things went fine. Luckily, Kendrie's favorite nurse Mary came to the rescue. Dr. B tickled her foot (Kendrie's, not Mary's) and I think the wiggling allowed Mary to get the heparin through, thank goodness!
So, back to the support part of the equation. After the great lunch we had, I had a meeting with a staff member at Camp Sunshine, the wonderful support group that meets in Atlanta. You know they are wonderful,and brilliant, and helpful, because look at the stunning family that was on the cover of this quarter’s Camp Sunshine newsletter:
I mean, really, how could they go wrong? (wink, wink)
But seriously, I am working with Camp Sunshine to get a support group started for parents of kids with cancer here in the middle Georgia area. As wonderful as their programs are, and the awesome facility and staff they have there, Atlanta is simply too far of a drive for most of us to zip up there after work in the evening. So it’s in the very initial, beginning, baby-step phase right now, but hopefully we’ll be able to pull it together, get the facilitators hired, and get our first meeting lined up in the next two or so months. I’m very excited about the prospect of meeting with other parents on a regular basis, and hope it’s well-received. If anyone reading this is located in the middle-Georgia area and would be interested in more information, or knows someone who might like more information, please e-mail me privately and I’ll be happy to let you know what’s in store.
Just thought I should mention that since starting steroids last week, Kendrie, along with Ivan, has been upgraded to a Level 5 Hurricane. She’s not eating us out of house and home yet, but we had an ugly episode today when Brayden was commandeering the television, watching The Saddle Club, and wouldn’t offer up the remote for change. I always forget how Sybill-ish Kendrie can become on steroids and it takes me by surprise when it happens; when my normally fun-loving, pleasant child turns into Charles Manson. Sooooo happy it’s only five days worth of steroids!
Speaking of storms, on a more serious note, I knew my perspective had changed when I started reading the front story of today’s local paper about the DEVASTATING local effects of Hurricane Frances. Apparently, a large number of pecan crops have been ruined and we’ll be paying something like $300 a bag at the grocery store for pecans this winter. Whatever. THAT is not devastating! That is annoying, that is too bad, that is “maybe you should make fudge with walnuts instead of pecans at Christmas” kind of stuff. It is not devastating. Devastated is how the parents of Carter Martin must feel right now, watching their beautiful, wondrous son pass away this afternoon at home after losing his battle with Ewing’s sarcoma. Devastated is how the parents of Thomas Peterpaul must feel, losing their son yesterday to leukemia. I never knew Thomas; I only met Carter and his family once. But I feel such a huge loss for their families, all the same.
I wish I had something profound to say about time … and how I’m sure they would give anything to have some of it back with their sons. But I don’t.
Peace be with you both, Carter and Thomas.
Kristie
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