Sunday, July 10, 2005


157 Days to Go

In the world of childhood cancer, specifically the world of childhood treatment for ALL, which is so insanely long, parents walk a fine line between relishing each and every moment with their child --- and just wanting to hit the fast-forward button and get it DONE WITH already! So we find ourselves counting down, eagerly watching the calendar, sort of like I do at the beginning of these journal entries ….. only six months to go; only two spinal treatments left; only 198 more methotrexate pills to take!

We encountered a few of those “LAST TIMES” this past week which took me by surprise, but which pleased me nonetheless. First of all, Kendrie had an appointment at the clinic on Friday morning at 8:30 am. As you’ve heard me moan and groan about the Atlanta rush hour traffic before (on numerous occasions!) you know that to get to the clinic by 8:30 am means leaving our house by 5:30am. It’s only 110 miles, but those last thirty miles, through downtown Atlanta, on a work day ---- Ugh. NOT going to happen! Friends offered to let us drive up to Atlanta and spend the night with them Thursday night, but we got off to a really late start on Thursday afternoon and I figured just going directly to the hotel across the street from the clinic would be easiest. That way, we’re right there close by on Friday morning, right? Famous last words.

Actually, the hotel stay was fine. But as it took me over an hour to get all three kids settled into the hotel beds, giggling and pillow fighting and “arranging” the twenty-two stuffed animals they brought, I began to think that staying at our friends’ house would have been easier. Then, when I woke up at 4am with Kellen’s foot in my back and his arm flung across my throat, I began the mental lament of “What was I thinking???” when it suddenly occurred to me --- this is the LAST time I have to do this! Every appointment from here on out will take place during a school week, so Brayden and Kellen won’t come with us. This will most likely be our LAST hotel stay as well, since Kendrie only has two more spinal taps to go, and I can request those for mid-morning. Woohoo! Those are two pretty great milestones!

Then, after Kendrie’s appointment, we headed to the Atlanta zoo to spend the afternoon. Last summer, when Kendrie was still in the more intense part of treatment and the kids and I were going to the clinic once a week, or once every ten days, I figured buying an annual family zoo pass would be a good thing. I hated to drive 110 miles to the clinic for a thirty minute appointment and then turn around and drive right back home. So, we made quite a few trips to the zoo during this past year and have definitely gotten our money’s worth out of the pass.

This day, as I presented our pass to the attendant, he noted the pass expires at the end of the month and asked if I would like to renew. “Think of all the money you save on the free admission with five family members” he reminded me. Inside, I snorted. “Ha! Since when does $15 for rock-climb wrist bands, $24 for personal cheese pizzas for lunch, $7 for frozen lemonades, $6 for Coke slushies, and $1.53 for the personalized flattened pennies at the exit constitute a CHEAP day at the zoo????” Outside, I simply said, “No, thanks. We don’t live close enough to use it very often” and it occurred to me …. This is our LAST trip to the zoo! We only go to clinic once a month now (barring any complications) and no longer have a need for Atlanta-area entertainment in conjunction with clinic visits --- another pretty great milestone! (Although we’re still certainly receptive to meeting Atlanta-area friends for lunch on clinic days!)

So, three LASTS that I am quite happy to have encountered.

Our FIRST this weekend was pretty great, too. To recap, let me remind you that my kids got out of school on May 27th. We had a really nice Memorial Day weekend, then on Monday, May 30th, Kendrie started coughing and the heavens opened up and started raining. Before I realized what had happened, our summer vacation went downhill faster than the Jamaican bobsled team at the Calgary Olympics. Two weeks of rain …. two additional weeks of coughing and diarrhea … eight days in the hospital …. another week of recovery …. Finally, at long last, Kendrie had what, in MY opinion, was her FIRST good day of summer yesterday. We went to a friends’ house for swimming, backyard baseball, grilling out, blowing bubbles, swinging, and all-around excellent fun. It really did my heart good to see her running, playing, dog-paddling, and laughing.

Of course, now the residual of Hurricane Dennis has arrived and we’re forecasted for days and days of wind and rain. But at least I’ve got the memory of one fun to day hang onto and pull us through, ha!


The clinic appointment on Friday went well. Her counts were back up to normal (normal for a cancer-kid) so they’ve restarted her chemo at about 65 percent. She goes back on Wednesday of next week for a spinal tap and they will re-check her counts again to see if they should increase the chemo, decrease it, or keep it the same. It sorts of becomes a balancing act now, to get her the maximum amount of chemo her body can tolerate, while aiming to keep her bloodwork within a certain range. Just like at the beginning of long-term maintenance, we need to find her "new normal" range. Keep your fingers crossed she continues to tolerate it well, with minimal side effects or complications.

Speaking of side effects and complications, if you have a spare minute, there is a really good, really informative and insightful journal entry on Andrew’s site right now that explains very well the difference between “remission” and “cure”. His mom did a great job telling about the medical and emotional effects of this roller coaster and I highly encourage you to read her perspective (one which I guarantee mirrors that of many leukemia parents!)

I did have my first-ever *moment* with the oncologist on Friday. First of all, we saw another doctor who is not her normal doctor, but one which I know and have always liked in the past. He was very polite, very warm and professional ….. but when I mentioned to him that she is still having a problem with diarrhea, he motioned to the Yoohoo drink and half-eaten package of powdered donuts on the counter and said, “Well, you know, diet does have something to do with it.”

I didn’t know whether to be angry, or embarrassed! I had bags of instant oatmeal in my purse, but the hotel room we were assigned the night before didn’t have a microwave, so I didn’t have any way of cooking it. We didn’t get up in time to eat a healthy breakfast in the hotel restaurant, and the choices in the clinic deli on the first floor weren’t the most wholesome. Personally, I thought Yoohoo and powdered donuts was a better breakfast selection than her FIRST choice; Oreos and a Kool-aid Jammer, which I wouldn’t let her buy. It was probably silly of me to take that so personally, but it really bothered me. This kid has cancer, for pete’s sake, and for someone to imply that I’m not making the best or healthiest choices for her was a little insulting. But, I’ve obviously gotten over it, seeing as how I gave her Froot Loops and a soft-serve ice cream cone from DQ tonight for dinner.

Kellen and Kendrie were playing in their bedroom this morning and I could hear Brayden asking if she could play, too. They kept telling her NO and it got on my nerves. (That’s the problem with having three kids … someone is always being left out and it just makes me crazy). So I called Kendrie into my room and told her she needed to let Brayden play, as well. This is the conversation we had:

Me: “Let Brayden play. You are excluding her, and I don’t like it.”

Kendrie: “I don’t know what 'espluding her' means.”

Me: “It’s when you leave somebody out on purpose. It hurts their feelings, and it’s mean. So let her play”

Kendrie: “But she doesn’t know the password. You have to know the password if you want to play”

Me: “Then tell her the password”

Kendrie: “But it’s in Spanish and I don’t know how to speak Spanish!”

The kids and I were running errands this afternoon, driving all over town as the rain from Hurricane Dennis was starting to come down and the wind was starting to pick up. I caught myself, having a full-length, perfectly rational, give-and-take conversation with them about the proper pronunciation, delivery, and timing of the “You smelt it, you dealt it” insult. How to use it, when it’s funny, when its not …. And it occurred to me: I went to college for this???

Well, I hope you all had a nice weekend. We certainly did, at least yesterday. Thanks to our friends Renee and Keith for welcoming us into their home and their pool (and Joe and Erin, I’m sorry you were running from Dennis, but that’s what happens when you let Uncle Sam move you to the Florida panhandle and leave the rest of us behind in middle Georgia!) Keith, as soon as you get off Netherlands time and re-adjust to Eastern Time, we'll do it again at our house! :)

Take care,

WORST PART ABOUT HAVING CANCER: Running in the rain today, to and from the parking lot, on all of mom’s stupid errands. I know that doesn’t have anything to do with cancer, but I have lost so much hair that my head kept getting wet from the rain and it was very upsetting (not to mention cold!) to me!

***Kristie’s response: In my defense, I did carry her on my hip into the first store, balancing my purse, shopping bag, golf umbrella in the wind, and a 46-pound kid all at once. Since my left butt cheek muscle is still sore from whatever strenuous hospital activity I did last week, she was on her own after that, but at least I tried!

BEST PART ABOUT HAVING CANCER: Did you see that cool bear in the picture on the front page? My mom has an online friend named Ms. Vickie who sent that to me all the way from California! The bear’s name is Kicks, because he’s wearing cowboy boots, but you can’t see them in the picture. I’ve sort of re-named him Boots, like the monkey on Dora, because I really like the cowboy boots. Mom took that picture to show you my new haircut, too. It’s a little thinner now ….. but that’s ok, because I’ve got a new pet bear! Thank you, Ms. Vickie!

No comments: