I never really captured the full awfulness of those dex pulses, which lasted as long as three weeks, during which time we were kept very busy managing his intense food cravings, and borderline craziness (some kids literally exhibit psychotic symptoms during long steroid pulses). In his last year of treatment Fergus had a one-week pulse of dexamethasone every 12 weeks. I tried to document one of these weeks, back in April of 2006, and I've included extended excerpts here. But we were "saved" from some of the more intense steroid effects that week, since Gus had some other things going on (intense, post-spinal headaches). But these notes still capture something of what life can be like with leukemia in the house--even at 18 months into treatment, when things had become relatively routine.
Dex Week: Introduction (4/2006)
In the current stage of Fergus' treatment ("Intensive Continuation", research protocol "POG 9905"), every twelve weeks he gets IV vincristine (a chemo drug), goes under anesthesia, gets methotrexate injected into his spinal column, spinal fluids are drawn to look for abnormal cells, and he starts a week of the steroid dexamethasone. You'd think the worst part for us would be the anesthesia, or the spinal tap. But it's the dex that we dread.
The affects of dex are a little different each time, but for Gus they can include:
- Red cheeks.
- "Moon face".
- Distended belly.
- Emotional volatility.
- Higher pitch to his voice.
- Insatiable appetite, and very specific cravings.
- Night time teeth grinding (intense enough that we can hear it in the next room).
- Thinking that is rather obsessive, a little strange.
- Hair that feels dirty all the time, even right after a bath.
- Afternoon exaustion.
- Night time waking.
- Early rising.
- With extended dex treatment he can develop an unpleasant, "chemical" smell.
- His drawings become more herky-jerky, and filled with elaborate (but hard to discern) detail.
Symptoms start slowly, subtly at first, but can become pretty severe by the end of the week (we used to have longer periods of dex, which were awful). We've also realized over the last few dex rounds that there is a period of several days after the dex ends that are also very hard for Gus, when he is moody, tired, and sad.
This week Fergus had his spinal on Wednesday afternoon, and we started the dex that evening with dinner. He gets 3 mg, twice a day.
Here is what 3 weeks of dex can do to our boy (March 2005):
(cringe)Dex Week: Day 1 (4/2006)
The emotional affects of the dex seem to be hitting quickly this time. Lauren says he was all over the map today: manic, weepy, furious. While driving to Burlington today, some minor slight led to Fergus hitting Norah in the face, twice, hard, while she was trapped in her car seat. Also, when he was mad at Lauren for something, he hit a storm window with a long pole, breaking it (I'm not sure he realized it would break).
This week could be a doozy.
Dex Week: Day 2 (4/2006)
His cheeks have gotten red, in the dexamethasone way, and a little puffy. His moods were a little volatile today, but they mostly corresponded to a headache that came and went during the day, even after some Tylenol (Ped-Onc said it was okay to give). He also reported a stomach ache for awhile (which he blamed me for, since I was pushing fluids to ease his headache).
Is the headache a chemo side effect or is it a side effect of the spinal? I don't think he's ever had a post-spinal headache before.
Dex Week: Day 3 (4/2006)
As the kids watch a video this morning, I hear keening coming from the den: Fergus' headache is back. A half hour passes and it seems to be gone again. In another half hour, it's back again, and he's lying sideways on the couch, close to tears.
While we had assumed that any post-spinal (or "Lumbar Puncture") headache would occur more or less right after the procedure, I found some info at Columbia University that indicates it can take a few days before onset:
"The onset of PLPH (Post Lumbar Puncture Headache) is usually within 24 to 48 hours after dural puncture but may be delayed as long as 12 days. Symptoms are usually self-limited. With conservative management 50 percent of headaches resolve spontaneously within four days, 75 percent within seven days, and 95 percent within six weeks. The longest reported PLPH lasted 19 months. Early onset of headache after LP correlates with a worse prognosis."
As I write this, Gus is working on LEGOs, but in pain again, saying "Who can help me?" I'll get him some Tylenol, but it didn't help much yesterday...how do I explain that he's mostly just going to have to wait it out?
He keens again and says, "I can't calm down, Daddy. All the pain that is building up inside is making me make those sounds." It's hard to know how much his reaction is amplified by the dex.
I push him to drink more water and right away he says, "It's not helping, Daddy!" And yet, ten minutes later, he's lying on the couch, giggling at a muppet video. Lying down like this may feel better to him, as bed rest is one of the recommended steps for ameliorating symptoms, the horizontal position reducing the "persistent leakage of cerebrospinal fluid (CSF) from the puncture site."
Urgh.
Dex Week: Day 3 (Addendum) (4/2006)
Glimmers of food cravings to come? Yesterday he had two apples at lunch time, which is unusual for him, and tonight had seconds of applesauce with dinner, in addition to a small cup of yogurt with dexamethasone and Zantac ground up in it, which he called his second dessert. Usually the cravings run more to spagetti and meatballs.
But more telling for me was that he finished a large dinner (and the above desserts), sat back and moaned (not with delight but something more like anguish) that he couldn't eat any more... then, not five minutes later, when Norah began eating a small half-cup of icecream for dessert, he declared that he was "starving" and had to have what Norah was having.
We had to re-configure our bedtime medication ritual--nightly Mercaptopurine, or "6MP", on an empty stomach--and negotiate with him so he could have a small cup of icecream.
He was asleep an hour later, before Norah even made it into bed. He nearly fell asleep as I read to him ""The Book About Moomin, Mymble, and Little My."
We'll have to wake him for the 6MP (and hope that his dex-brain doesn't spring to life when we do).
Dex Week: Day 4 (4/2006)
A tiring day that saw Fergus' headaches becoming less frequent (I actually spelled that word "freakwent" the first time, which probably means something), Norah complaining a lot about her own phantom illnesses and then getting the last laugh by throwing up at the grocery store deli counter.
And here I thought she just wanted attention.
It also saw Fergus alternating between sweetness and senseless fury, and on two different occassions screaming over and over, "I wish I'd never been born!" Well, buddy, we're glad you were, so enough already.
No food cravings to speak of. Still a fair amount of high-pitched keening when his head hurt.
Three days of Dex to go.
Dex Week: Day 5 (4/2006)
I'm at work today. Here are a couple of status reports from Lauren:
Morning, via online chat:
9:10 AM me: How's everyone?
9:11 AM Lauren: ok; no headaches yet; some volatilty..."Nobody loves me; I wish I'd never been born"...both were up at 6:15, so will be tired later. He's mad at me for not being able to show him the video you made last night.Afternoon, via phone:
At 3PM Lauren called me from the car with an update. Both kids were mad at her because a thrift store she promised to take them to happens to be closed on Mondays. As she told me about this, in the background, Fergus announced:
I have five rules for you, Lauren:
- I have no toys.
- I’m never going back to that store.
- We will lose our house.
- The roads will be destroyed.
- All the houses will be blown up.
My six-year-old nihilist.
Dex Week: Day 6 (4/2006)
I was home with the kids today (a usual thing on Tuesdays), and things went relatively smoothly. Fergus was somewhat emotional, but also quite sweet at times.
No headaches (and Lauren says he had none yesterday either). He spent a good amount of time working on drawings, with recurrent themes based on LEGO robots or a bad guy from a Muppet movie called Doc Hopper (I think he has a chain of restaurants specializing in fried frog legs, much to Kermit's chagrin).
The dex may be wearing him out a bit...this afternoon while the three of us played outside, he eventually said he was tired, and went inside to watch a video. Maybe the exaustion of the dex is muting the volatility. While there were glimmers of the dex kid who can't get enough of a certain food, I still wouldn't say he was dex-obsessing about particular foods, and it is still possible to dissuade him from endless "refills" of fries, or whatever, especially once the food in question is gone (whereas when he's full-blow dex-boy you can tell him that there is no more spagetti and meatballs and it won't matter...it will come up again and again until you relent and make another batch of noodles and sauce).
He created a delightful 10 or 12 page booklet today called "The Book of Scary Stuff," with pictures and text. Sample scary stuff includes: "Walking bushes are the most frightening thing in the world," "a giant turkey that is mad with a dinosaur tail," "killer crocs they live in swamps they kill," and (speaking of Doc Hopper) "Doc Hooper (sic) rips off the legs of frogs to make french fried frog legs." Ooooh, gives me the willies just to think about it.
Yesterday, which was perhaps an angrier day, Gus wrote this letter (to his twin friends) on a computer at Lauren's clinic:
"To luke this is an
Emergency note for you
& libby a laser
cannon just fired
lasers at the space
station do something
quickly before they
burn down the town.Signed fergus"
Tomorrow: the last day of Dex.
Oh, and we made it to the thrift store today, despite yesterday's dire warnings from Fergus. He was delighted to come home with three dollars worth of plastic breakfast food. Norah came home with some groovy purple pants.
Dex Week: Day 7 (4/2006)
Gus was up early (5:30AM), which is fairly typical of Dex: fitful sleep, buzzing brain, late afternoon exaustion. When I left for work at 6:15, he was sitting with Ocho (one of the cats), watching a video. No big deal. His last dose of dex was just 2 hours away.
After work, at about 7:15PM, I met Gus and his Mom and sister at a local pizza place, where they had met up with our friend Sarah and her daughter (who is Gus' age).
He was a different kid.
He even looked different: his face was suddenly round, his cheeks bright red. This is the face that all kids on steroids eventually get, such that there can be more of a family resemblance between dex kids than there is between the kids and their parents. It's unnerving.
When I got to the table, he was sprawled on the bench. "Hello down there, Daddy," he said. Minutes later, as I ate the one leftover piece of pizza, his obvious exaustion was replaced by (or overridden by) manic energy. Luckily the restaurant was nearly empty, because soon he was prancing around between the tables, calling out, "Let the show begin!" or, "Now ladies and gentlemen, it's time for the Two Girls Rock and Roll Show!" or "It's time for the 'Brother and Sister Smack Show!" Thankfully, this last show was not about hitting each other, but about slapping your own thighs to make drum sounds and then dancing along to the beat (Sarah was the only one willing to do this with Gus in the middle of the restaurant...Lauren probably would have done it, but she was away from the table at the time).
But in spite of his excited emcee performance, Gus was also very quick to get upset if we didn't all do as he directed us to do, or if Sarah took a picture with him in it (she was trying to get a good picture for a newspaper story about Lauren's triathlon training).
Lauren said that before I got to the restaurant, there was a moment when Sarah's daughter wanted to use a certain green crayon to draw with, and Gus could not stand it, and wailed, and then yelled at the top of his lungs (in the restaurant, mind you) the familiar refrain from this week, "I wish I was never born!"
We got out of there fairly quickly, before things got too ugly. Outside, along the railroad tracks, he directed us in elaborate, manically-contrived stories that we had to act out, and if we strayed from whatever script he had in his head he screamed. E.g. he announced we should all sing railroad songs, and when Sarah's daughter obliged, he kept yelling, "Stop! Stop! Stop!" and it later turned out that he wanted us to sing "I've been working on the railroad" and nothing else. Then there were awful tears when we started talking about going home, and when Sarah and Co. actually did go home, he was furious, and stormed off down the railroad tracks.
I mean--wow.
So let's all cheer for this picture: no more dex:
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