DEX, or Dexamethasone, is a cancer fighting steroid. Jaxon had 2.3ml of DEX twice a day for the first 28 days of treatment. We met DEX again for a week at the beginning of August (3.75ml twice a day), and today we finished the second week-long "pulse" (3.75mg twice a day). DEX comes back into the picture again in December when he begins Long-Term Maintenance.
I say 'we' because it's really a joint effort to get him to take the meds. He's supposed to take an antibiotic (Septra) every Fri-Sat-Sun (for the entire 3 year treatment). Since it's been so much work to get him to take the DEX, I delayed the Septra by a few days. He started this week's course of that at bedtime tonight. DEX tablets were 3 pills of varying sizes in the morning and one big one at bedtime. I've learned that the liquid Ranitidine he has had to take with the DEX is actually just Zantac. We got that in tablet form as well and gave 1/4 of a pill with the bedtime DEX. Septra is half a larger pill every morning and evening for 3 days a week, usually on the weekend.
On his last round of DEX and Septra, he stopped tolerating liquid meds. I had to add quite a bit of other things to try disguise the taste and help it go down. It just got to be too much volume that he had to take in, and he started throwing them up right after drinking them, so we've switched to tablets. This has made things so much easier. I poke a hole in a jelly bean with a sharp knife and then shove the pill in. He takes one regular bean for every medicated bean. I've been extra vigilant with teeth brushing as he has 4 known cavities. Sorry to the Dentist, but the Oncologist wins on this one. I'm hoping that we'll eventually be able to transition him to swallowing tabs (maybe inside gel caps) so we can just get it over with! My friend who has a daughter with ALL a little older than Jax told me about this
cool little straw - we might order a few of those. I know that in time, he'll eventually learn to swallow pills. The thing I struggle with is that I try to not make little things more difficult than they need to be, since he has to comply with so many "big things" and has no choice or control. I'm okay to try a few gimmicky things to make the transition easier for him (and for me!). Down the road he will have many pills to take, and we just can't be pumping so many jelly beans into him.
Yesterday, the boy ate ALL. DAY. LONG. While he was still eating one thing, he was
demanding asking me what he could eat next. Sometimes while I was still preparing the previous request, he'd be placing his order for the next item. I wish I had documented everything he consumed. When I teased him about how he ate all day long he said "Mooooom ... you're giving me medicine that makes me hungry!" It's so strange to be forcing him to take meds that I know are going to radically change his behaviour and demeanour. He doesn't get angry about food so much, but if he doesn't get his way about where we are going and when, what we are planning
or even just thinking about planning, what movie or game the boys will watch or play ... watch out! Now that he's had his last dose of DEX, the symptoms will gradually fade over the next few days.
He obsesses over food, but it is often an agonizing decision for him as to what he wants to eat. My suggestions are rarely accepted. Or, he wants one thing, and one thing only - usually something I've run out of or didn't think to stock in the fridge or pantry. Sometimes he thinks he wants something very specific but then when it's prepared and placed before him, he's lost the craving. There's something called "chemo tongue" - the meds change the taste of things. He's eaten a shocking amount of Mr. Noodles. Though I restricted him (and the other boys) to one package a day, we ran out. *gasp*
Yesterday alone, there was french toast (no crust), tomato soup (in the daytime and also in the wee hours of the morning), seaweed flavoured rice crackers, pumpkin pie, beef stroganoff (middle of the night), chunks of cheddar cheese, chunks of garlic sausage (no crust! I peeled the paper off, he just didn't like the outside part), grilled cheese sandwich (no crust, sometime close to midnight), milk, decaf tea with milk and a bit of sugar and plenty of stool softener (it's called PEG - he gets this every day), 8 jelly beans - 4 of them laced with DEX. I know I'm forgetting some. Pizza! He had pizza - no crust, just the toppings.
Today's tally ... before noon:
• One small square of PB&J sandwich, leftover from yesterday (no crust)
• 2 farm fresh eggs, scrambled with grated cheese and ketchup (did not finish)
• 300 ml milk
• Pumpkin pie (store bought, no crust, lots of whip - from a can)
• 200 ml cold water
• 2 seconds later ... "I'm still hungry."
• Nachos (did not finish)
• "While you're making the nachos, what can I eat?"
• Decaf tea with milk and PEG, aka "poo powder"
• "Mommy? I'm hungry."
• Me: "Let's do your medicine beans now so we can get it over with."
• Jax: "Ok. And then right after that I'm going to ask for something to eat."
• 6 jelly beans (3 with meds)
• Handful of cheddar flavoured rice crackers
• 300 ml tea + peg
We've run out of Mr. Noodles so he's persistently hassling me to go buy some. I'm not keen to take him into the store as he is quite fragile right now, feeling downright crummy. His ANC (absolute neutrophil count = immunity) was .38 last Monday, and I will be taking him for peripheral blood work tomorrow to see where he's at. We've been told to expect it to drop right down to nothing. Anything below .50 is considered "critically low", and we want it to be upwards of .75-1.5. Paul and the big boys are gone fishing for the day so maybe we'll see if Oma can go get us some groceries.
With his dropping ANC (due to the 3 doses of DOXO this past month), his energy level has rapidly decreased. He spends most of the day resting or lounging. He's put himself down for a nap in his bed twice this week.
His hair is falling out again, also thanks to the DOXO. Our oncologist said she has never seen anyone keep their hair after DOXO. It will likely be all gone within the next month, maybe sooner. The meds he'll get in the next few weeks also cause severe hair loss. It had started to grow again after he shed quite a bit during the first 6 weeks of treatment, but didn't lose it fully. This time it's just in time for cozy winter hats! I'm thankful for the cooler weather so I don't have to worry so much about him overheating or getting dehydrated. Much easier to keep warm than to cool off.
On Saturday night he started to complain of lower back pain. He was soon in agony, yet didn't want to take any pain meds (morphine) because he'd have to drink it (no tabs of that yet). "Mom, that stuff tastes AWFUL!" He conceded, and slept well until the meds wore off and his hunger woke him up at midnight. He started to have similar pain last night but it didn't get as bad as the night before. I spoke to the oncologist on-call at BCCH and he suspects the pain was likely caused by the DEX. That stuff is no joke!
Today is Day 22 of Delayed Intensification. Next clinic appointment is Monday Sept 8. He and I will stay at
Jeneece Place the night before, as the appointment is early and he has to fast for a possible sedated procedure. The planned treatments for this day (Day 29) are count dependent. Blood work is first on the list and if he makes counts (ANC > .75 & Platelets > 75), he'll have an LP (lumbar puncture/spinal tap) to check his cerebral spinal fluid (CSF) for leukemic cells (this is done with every LP and has always been negative). After the fluid is drawn, he'll get more methotrexate injected in his spinal fluid (IT-MTX). If it's a go that day, he'll also begin 4 days in a row of an IV chemo called Cytarabine (ARAC). It will be done in the clinic in Victoria so he and I will stay those 4 nights at Jeneece Place. He'll stay "accessed" so there will only be one poke in his button on the first day, and the needle and short tube will stay in until he's finished the 4 daily doses. That day he'll also start an oral med (Thioguanine or 6-TG) for Days 29-42. However ... if he doesn't pass his blood test on that day, we'll get a chemo break and try again the following week. We've been told to expect at least a week delay before starting DI Day 29. It is more common to have a delay than to go ahead as planned. Does that make sense? Probably not.
So if Day 29 is on Sept. 8 or 15 ... we'll have a 4 days of IV ARAC, 4 days off, then 4 days IV ARAC again. I'm considering going to Vancouver for the second cycle of ARAC, just for a change of pace and to see friends at RMH and our Doc at BCCH, but I'm not sure yet. My folks will be here for a week or two starting on Sept. 15 so I don't want to be gone for most of their visit (even though I'd be away in Victoria anyway). But if he has to wait a week or two for counts to climb back up, that might not be an issue. We shall see. We hold our plans very loosely around here.
I've rambled long enough. I'll end this with the great news that Paul and the boys did catch a big one! A 15 lb. Spring salmon off the shores of Parksville. When Jax heard they caught one, all he could think or talk about was how much he wanted to eat salmon. It was a few more hours until he got his wish, and in the meantime he had some chocolate chip pancakes. He also wanted some Kraft Dinner right before Paul and the boys got home. I shut that down pretty quick and he accepted my decision. Just barely.
The salmon was really tasty. Looking forward to more meals of that.
