Do you realize that summer is almost over? At least if you live in our neck of the woods, where school starts in exactly three weeks, it’s almost over. So, in an attempt to incorporate some **FUN** into our summer (since taking my ungrateful children swimming every day does not, according to them, constitute enough **FUN** in their lives) I decided to make Kendrie’s clinic visit this week into something a little more adventurous.
Her appointment was early this morning, which means we drove up last night and stayed in a hotel. I had all three kids with me and decided to go up early and locate **FUN**. First choice was the zoo, but the Atlanta zoo apparently closes at 4:30 each day. I discovered this at noon, online at home, which is a two hour drive away, so realistically didn’t have enough time. **FUN** choice #2 was a place called Dunwoody Nature Preserve (animals are animals, right?) Unfortunately, our only brush with animals there was the screaming case of chigger bites I got on my legs after traipsing through the nature trails with my hot, sweaty, tired children. Have I mentioned they are also ungrateful?
I worried Kendrie might get tired and thought the stroller would be a good thing to have; Lord knows I wouldn’t want to have to carry her through the preserve …………. I now have a serious philanthropic desire to purchase signs for the Nature Preserve that let all the other moms know the trails are NOT stroller-friendly. So there I am, carrying the stroller over tree roots and inclines and boulders, itching from the chigger bites, sweating like a coal worker in Hades (did I mention that the heat index in Georgia yesterday was 115?) and my kids are going on and on and on about how bored they are and didn’t I bring anything good to drink besides water????
So we went back to the hotel with promises of swimming, the boring activity which got me in this mess in the first place, but which my children suddenly couldn’t WAIT to do. You can pretty much guess that five minutes before reaching the hotel, storm clouds floated over and the temperature dropped by about twenty degrees. Or maybe it just felt that much cooler since I wasn’t dragging a stroller and three un-drunk water bottles with me. That’s ok, it killed a half an hour, leaving me only four hours left in the hotel room with them before bedtime, refereeing their arguments over who got to sleep in which bed and whose room service meal was whose.
(sigh)
Kendrie’s appointment this morning went very well, after she got done being sick in the bathroom. Nothing like starting the day with a little barfing in a public restroom to remind you that your kid is on chemotherapy (just in case the bald head wasn’t enough of a reminder.) More on the medical front later -----
So, determined not to repeat my mistake from yesterday, after the appointment I took the kids to the REAL zoo, where I spent $112.00 (no lie) on admission, lunch, snacks, and ride tickets; walked my tired, sweaty body around the exhibits for three hours looking at sleeping animals; only to have the day end with all three kids saying, “Is that all?” as I tried to herd them out the gates at the end.
Does anyone have that speech about walking ten miles uphill to school both ways in the snow on a VHS tape that I can borrow???
Actually, we had a pretty fun time at the zoo. The kids were just mad that I wouldn’t buy them yet another snow-cone on the way out. (Ungrateful hooligans.) The Atlanta Zoo isn’t huge, but they have a pretty respectable gorilla/monkey exhibit and most of all, a Rock Climb that Kendrie attempted.
Atlanta Zoo, July 2004
You can’t tell by looking at this photo, but Kendrie made it up about 20 feet (approx 18 feet farther than I thought she would.) There was a lady standing by us watching her son go up next to Kendrie, and she made a nice comment about “Look how high she’s going …. How old did you say she was?” and in my moment of maternal pride, I couldn’t help but burst out “I know, and can you believe she had chemo this morning?!?”
Anyway, walking around looking at all these animals in their cages (natural habitats, if you want to be p.c.) I was thinking, yep, this sure isn’t the life these poor guys had planned. Imagine, you’ve got visions of a comfortable, cozy watering hole in Africa where you and your monkey buddies can lay around playing poker or telling jokes all day long until you get the urge to wander off and sniff some backsides or eat bugs off one another. And then somehow you find yourself in the Atlanta Zoo instead, with a bunch of goofy kids tapping on the glass windows of your home (those weren’t my kids) and making faces at you (ok, THOSE were my kids.) Not quite what you had envisioned, but all in all, things could be worse.
And that’s when I realized (oh yeah, you saw the analogy coming a mile away, didn’t you?) that we all have times in our lives when what we expect is not what we get. I can think of several for me personally, but I won’t bore you with the details of all of them. Primarily, of course, is *expecting* my children to be happy and beautiful and perfectly healthy. I thought their biggest medical concern would be inheriting my bad vision or lack of athletic skills. Instead, leukemia dropped a bomb on our family. But I guess two out of three isn’t so bad. Happy and beautiful, right? (although don’t tell Kellen I said he was beautiful like his sisters!)
And like the monkeys, I just have to sit back for a brief second to realize that although it’s not what I expected, it could certainly be worse. Kendrie is (knocking frantically on my wooden computer desk) doing amazingly well (boring medical stuff in the next paragraph.)
Her protocol, CCG-1991, has four arms of treatment. Kendrie was randomized to arm D which means she gets two Interim Maintenance phases and two Delayed Intensification treatment phases. These DI phases (according to the oncologist today) can almost be considered a “re-induction” because they are so hard-hitting. Many kids have complications and set backs with only one DI, let alone two. By the time kids with two DI’s get to this point in their protocol, their little bodies have been hit with harsh chemo for almost eight months. Their bone marrow is tired and often has trouble recovering by now. It can take weeks of delays and setbacks to even reach this point in the chemotherapy regimen. I had to remind myself of that when I saw her climbing that rock wall so far over my head this afternoon.
The medicine she got through her port today, and which I will be giving her in shot form for the next three nights here at home, like I did last week, is called Ara-C (cytarabine). It commonly causes counts to crash, fevers and nausea. At her appointment today her blood work showed that her counts are indeed starting to drop, which is to be expected. She is following (so far) the same pattern of her first DI, and needed a transfusion last time by the end of DI.
In a stroke of incredibly bad timing (or incredibly lucky timing, depending on your viewpoint) we are scheduled to attend a cancer family retreat at the beach the last week of DI. Although our road has not been too rocky, this retreat is something I really think would benefit my family at this time. Our friends and family, both physical and online, are amazingly supportive. (Yes, this means YOU, if you’re reading the journal!)
But a week at the beach to relax and regroup and reconnect as a family, without CANCER being the focal-point of our life for a few days, would be the perfect way to end the harsh chemo before Kendrie begins the “easier” maintenance phase of treatment.
In a sick and twisted manner, I am almost hoping that Kendrie’s counts go ahead and drop rapidly, so that if she needs a transfusion, she can get it before the retreat. Yes, there are doctors and nurses at the retreat, but I want that week to be about fun and playing and FORGETTING about leukemia for a change. We can’t do that if she is feeling rundown and tired from the chemo. And of course if she’s too run down, we simply won’t go at all. Not the end of the world, but disappointing nonetheless.
It’s odd to me to sit here and think about the last two weeks of DI and how I hope Kendrie’s counts recover enough to enjoy the retreat ………… because that means we are only two weeks away (barring any delays in treatment) from reaching long-term maintenance. I feel like I should end that sentence with a big ole’ exclamation point, but I don’t want to jinx it by celebrating too early.
Well, I’m rambling now. If you have an extra penny in your pocket and happen to be wandering by a fountain, please throw it in and say a wish that Kendrie feels recovered and good enough to attend this retreat. She would enjoy it. Her brother and sister would enjoy it. Blaine and I would enjoy it. Well, except for the sand, but we’ll get over that. And if the fountain you are passing happens to be in the Atlanta Zoo, look overheard and you might just see a 4-yr old rock climber who looks a little bit like a monkey.
Thanks for checking in and especially for signing the guestbook. The notes of encouragement mean a lot to us and we love seeing who has stopped by.
Have a great weekend,
Kristie
ps. To all my local friends ---- the Macon Red Cross Blood Donation Center (located behind Galleria Mall by Olive Garden) is now taking platelet donations. Many, many leukemia kids need both whole blood and platelet transfusions and you can make a huge difference by helping out with a donation. Donations for platelets are by appointment only and you can call Maureen Johnson, Donor Recruitment Rep for Central Georgia at 478-405-0195 ex 27 for more information. Have an hour to kill but forgot to make an appointment? No problem! Whole blood donations are on a walk in basis .......... so walk in and save a life!!!!
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KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: Well, I'd say throwing up at my doctor's office, but really, that was over pretty quickly.
BEST PART ABOUT HAVING CANCER TODAY: Going to the zoo after my appointment --- and my mom splurged on a family pass and says we can go back again. I’m going to keep trying until I make it all the way to the top of that rock climb!
Quick Update: Friday morning, 9am
Well, I am man enough to admit when I am wrong. Here I thought we were going to coast through this second DI with no complication ..... not that this is major, but after receiving her ara-c (second week, first dose) yesterday, Kendrie woke up vomiting at 4:30 am with a fever of 101.3. (of course, this is after the one night in a blue moon I was up until almost 3am surfing CB sites and updating hers .... figures ..... Terry, what was that about time management skills??? Ha!)
Because her ANC yesterday was 1100, the on-call doc (really nice guy, gracious even at 4:30 in the morning) said just to watch it for a little while. By 7am it had broken, but I just took it again and it's up to 101.9.
I'm going to call again, but after driving HOME from the clinic yesterday I'm not looking forward to turning around and driving back up there. Naturally I'll do whatever the docs say, but I'm hoping with a decent ANC and the ara-c from yesterday they might let us stay home and give Tylenol. (that's the lazy-I-was-sort-of-hoping-for-a-nap-today part of me talking!)
Anyway, wish us luck. Aren't I a goof to be so insulted by cancer??? :)
Update: Friday evening, 8 pm
The doctor did want to see Kendrie and draw cultures, so back into the van we went. Her fever has been at 100-101 all day. They are 99.9 percent sure its just the ara-c, but to be on the safe side, and to buy us 24 hours in case the cultures turn up positive, they went ahead and gave her iv antibiotics. Now they said we can treat her with tylenol for 24 hours and unless her fever goes high and doesn't break, we should be ok until the cultures come back--- almost assuredly negative.
I know she doesn't feel good because we (naturally) got stuck in Atlanta 5 pm traffic and the ride home took almost three hours. Instead of complaining, she just stared out the window with no expression on her face. She has had nothing to eat or drink all day today, which makes giving the 6TG easier tonight, but the thought of going in there with the sub-q injection of ara-c makes me feel very, very guilty.
I suppose that's what I get for being all cocky about breezing through DI #2!!! Note to self: tape big fat mouth shut! :)
Update: Saturday night
Well, we wound up going back in today for another blood culture and more iv rocephin. Her temp all morning was high and when it got to 102.8 (axillary) I felt like that was a pretty high temp no matter who you are. So, I called and they told us to go back in even though they are still almost positive it's the ara-c. Small blessings, though, this on-call doc suggested we go to the Children's Hospital here in Macon, only twenty minutes away. So it was only a three-hour visit to the ER instead of a seven-hour trip. And, he had called ahead and they were waiting for us and took us right back to a room in the pediatric ER, which was really nice.
Her cbc shows everything is dropping and her white count is almost nil, so the oncologist said if she's still running a fever tomorrow she will be admitted. I'm not going to complain though. We haven't been admitted one time since dx, so if a fever/neutropenia admit at the end of DI #2 is necessary, then at least I have 24 notice to pack a bag. :)
Wish us luck; hope everyone is having a nice weekend,
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