Thursday, August 12, 2004

LONG-TERM MAINTENANCE, WE HAVE ARRIVED!

Day #1, Week #1, LTM, wahoooooo!

Ten months ago tomorrow our daughter Kendrie collapsed on our front porch after blood tests showed her to be anemic. Perhaps “collapsed” is too strong a word ……. fainted, passed out, so woozy she fell down …….. take your pick. Whatever the verb, little did we know that in just a few short days we would go from having a child who we thought was simply anemic to having our world totally rocked with the words, “I’m sorry, it’s cancer.” I wish no parent should ever have to endure that shock and grief, and at the same time I give thanks that the past ten months have gone as smoothly for us as they have.

Today we began (notice how I always say “we”, when in reality its *Kendrie* who’s doing all the work?!?) the phase of therapy known as Long Term Maintenance (LTM--also called Continuation on some protocols.) Basically, the final phase of treatment for ALL, which consists of lower-dose chemotherapy given for two to three years to kill any remaining leukemia cells. “This portion of the treatment is less toxic and easier to tolerate than induction and consolidation.” --- I copied that sentence verbatim out of my Guide to Leukemia book – and I plan on holding the author at her word! And for us it’s even better, since Kendrie’s LTM will last less than that, approx sixteen months. In fact, her oncologist today gave us the date she is scheduled to finish her therapy; December 15, 2005. Start making plans now, or pinching pennies for airfare if you need, because you are ALL invited to the off-treatment party!

Treatment today consisted of iv chemo and a spinal tap for intra-thecal chemo. The phone rang about 4:30 and my heart literally stopped for a second. Thank goodness it wasn’t the oncologist calling (other cancer-parents know exactly what I mean) which means her spinal fluid was clear (no leukemia cells found!) It’s hard to believe she won’t have another spinal tap for three months. For a good long while in her treatment plan she was having one a week. We won’t know what to do with ourselves, with twelve weeks in between spinals! Here are some highlights from today’s appointment:


"Woo-Hoo, look at this treasure chest! It *almost* makes the back poke worthwhile. Or at least it would have been, if my mom wasn't such a moron that she put the magic-cream a little too low on my back so my doctor had to give me a DOUBLE DOSE of sleepy medicine today! Whoa, I still feel woozy!"



"Hey, the clowns were visiting today! This guy was a hoot; he didn't even know how to sing the ABC song and I had to sing it for them and explain why they kept missing a few letters. They must not have paid as good of attention in pre-kindergarten as I am doing."




"This was definitely the BEST highlight! Our new friends Mrs. Jenny and her daughter Catie that we met at the Lighthouse Retreat a few weeks ago were in clinic today, too, so we got to have lunch together! Even better (and a fabulous coincidence!) is that Catie and I each only go to clinic one day a month and can you believe that we discovered today that we are going on the same day each month?!? How great is that?!? So now we have a standing lunch date every time. Mrs. Kristin, Brandon's mom, if you're reading this, we want you to come with us next time, too!"


While I’m not so na├»ve as to assume the next sixteen months will be problem-free, it is a great feeling to know we’re only scheduled to burn up the road to and from Atlanta once a month from here on out. The flip side of that is the increased oral chemo she will receive at home …. Check this out:

Purinethol: 1 tablet in the evenings except for Sunday when she receives 1 and a half; taken on an empty stomach; no milk or dairy; preferably at bedtime

Methotrexate: 6 tablets every Thursday, except for spinal-tap Thursdays, taken on an empty stomach, no milk or dairy; preferably at bedtime

Decadron: (the steroid from Hell): one-half of a 4 mg tab in the morning, except for on clinic days, one-half of a 4 mg tab in the evenings, one .5 mg tab once a day, taken with food, NOT on an empty stomach, taken for five days every twenty-eight days

Zantac: take as needed to keep the Decadron from causing stomach pain

Zofran: take as needed for nausea

Bactrim: 1 tsp in the morning and 1 tsp in the evenings, Saturday and Sunday only

Amoxicillan: take as prescribed for upcoming dental appointments

You get the picture. I swear, you need a degree in rocket science to keep all this straight.

Speaking of medicine and the numerous other things these brave kids have to endure, I thought I would total up what Kendrie has been through the past ten months, to put it in perspective. It was really depressing (and a slight indicator of my lousy math abilities) when I had to get out a calculator. And bear in mind that this is an estimate …. There are many other meds that aren’t prescribed (like Tylenol) that she took for various aches and pains. Plus, after awhile, we just quit keeping track of non-scheduled drugs.

In the ten months between diagnosis and long-term maintenance:

Rounds of IV Chemo: 25

Rounds of IV antibiotics for fever: 2

Leg shots (Peg, ARAC, and flu shots): 20

Spinal taps (aka lumbar punctures): 14

Bone marrow aspirations: 5

Bone marrow biopsies: 1

Doses of oral medication: 434

Blood draws, office visits, vital signs and exams: way too freakin’ many to count

Remember also that Kendrie has had an almost textbook perfect treatment so far. We haven’t been inpatient since diagnosis and have only been to the clinic/ER for fevers twice. These totals, no matter how high they might look to people in the non-cancer world, are probably lower, if I were guessing, than 90 percent of the other kids out there being treated for the same thing.

I don’t know whether to be amazed or depressed, ha!

I also thought I would stay with my theme of “ten months” and list the top ten ways leukemia has changed ME the most.

1. I used to carry CDs and spare sunglasses in my glove box. Now it is perfectly normal (in fact, wise) to travel with a syringe of Zofran and an emesis basin, not to mention the Purell and antibacterial wipes in my purse and the car.

2. The 10 speed dial buttons for family and friends on our phone have been replaced by the numbers for the oncologist, his nurse, his scheduler, the pediatrician, Tricare, four separate pharmacies, and Pizza Hut.

3. The chaotic sounds of beeps and whistles and bells used to make me crazy. Now, the five-minute warning beep on an infusion machine is music to my ears.

4. The night before the first day of school, I used to lay in bed and worry that my children might not make friends or like their new teacher. This year, I laid in bed and worried one of Kendrie’s classmates might sneeze on her and put her in the hospital.

5. I used to plan our vacations around school schedules and the fiscal calendar. Now I plan them around chemo schedules and anticipated ANC counts.

6. Used to, I couldn’t watch the St. Jude’s fund-raising commercials because seeing all those sick, bald kids made me too sad. Now, I watch eagerly, hoping to see some of our Caringbridge friends!

7. I used to think (vainly, I admit) that Kendrie looked a little bit like me when I was small. Now I realize that when her hair finally started to grow in, she looked more like Billy Idol in the White Wedding video.

8. My sense of humor has become demented to the point that I laughed and felt smug when I realized no hair means no need to worry about any kind of lice outbreak at school.

9. Speaking of hair, I used to think my own gray hairs made me look old. Now I like to imagine that they signal wisdom and are hard-won.

10. I used to think it was easier to give help than to ask for it. And in fact, it might still be easier. But I will never forget, or cease to appreciate, or take for granted, the help, in its many various fashions, that our family has received over the past ten months.

So, in closing, I’d just like to make my public proclamation to Kendrie that like the song says, the road ahead may not be breezy, but I promise to try and make it easy. You’ve made it through the hardest ten months, that’s for sure. I have great confidence in your ability to manage the next sixteen with grace, style, and some super-hero butt-kicking power!



No matter where the trail may lead, I love you, Mom

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