LTM Cycle #1 nearly done!

We are nearing the end of the first 85-day cycle of Long Term Maintenance. Only about 10 more of those to go. 10 more sets of 85 days. No biggie, right?

LTM Cycle 2, Day 1 will be Wednesday March 4. It will begin with an LP (lumbar puncture, aka spinal tap) to check his spinal fluid for cancer cells and to inject chemo into his spine, to kill any cells that dare show their ugly faces. He'll also get his regular monthly IV chemo (1.2 mg of Vincristine) and that evening will start the infamous steroid week. Again. More on that later.

As we began LTM, we were warned that it might take a few weeks/months/cycles to get the dosage for his at-home meds sorted out. Some kids tolerate 100% of the recommended dose. Some kids get bumped down to 3/4, 1/2, 1/4 ... I've heard of one patient who is at 12% of the protocol dose, because that's how much the child's system can handle and still keep blood counts within the magical window that makes oncologists happy. (ANC between 0.75 - 1.5.) If the ANC is too low, the kiddo is getting too much daily/weekly chemo. If ANC is too high, the kiddo needs more daily/weekly chemo to suppress the marrow enough to actively seek and destroy any remaining (or returning) leukemic cells. Jaxon's counts were great for the first check-up of this cycle. On the second check-up, his ANC had dropped to 0.64. Not yet low enough to adjust his daily/weekly chemo dosage, but low enough to watch closely for a few weeks. That day (Feb 4) he began his monthly 5-day stint of steroids (Dex). Dex is known to artificially (but still effectively) elevate the ANC, and the rest of the blood counts as well. The 0.64 result could have meant that he was brewing a virus like a cold, or could have meant that his body decided that the 100% dose of the daily/weekly chemo was too much. The plan was to check counts again in one week and see where they were at. The expectation was that they should be significantly elevated, as usually happens during Dex week. If they were still low, then something suspicious might be going on. I took him for counts on Feb. 10 and indeed, his ANC jumped quite a bit to 2.03. He also started getting a bit sniffly/sneezy/coughy that day - indicative that he indeed had been brewing a virus but the Dex had suppressed the symptoms. Oncologist was happy that ANC did rise with Dex, but still wanted to see where it would settle at after Dex had worn off. Today we went for yet another arm poke and results showed that his ANC is at exactly 0.75. Onc is happy with that, and we won't need to check next week. Two weeks from now will be regularly scheduled check-up (LP + IV Chemo).

If his ANC had still been low, we would have stopped all the at-home daily/weekly chemo until ... I don't know when. It's called a "chemo hold". Because of the clinical trial that he is on, once his ANC reached the minimum level, he would have been started back at a reduced dose of the protocol standard, and then watched to see how his body was tolerating it. For many kids, this up and down takes a long time and lots of bloodwork to get sorted out. The monthly IV chemo and the 5-days-a-month-steroid would continue, no matter what his counts are doing.

There's also something peculiar going on with his kidneys. Way back in May at the end of Induction, there was suspicion of a kidney stone as he had some crystals in his urine and some intense lower back pain. X-rays and ultrasounds showed happy kidneys and urinary system so we left it at that. He had one or two nights of intense lower back pain in August/September, but that could have been from the craziness of all the meds he had during DI at that time. In November and December he had a few pink pees (one with blood streaks), indicating that he may be passing a kidney stone. Pee samples were taken and he showed some indicators of possible kidney stones, but nothing definitive. ONC wanted to have another ultrasound to see if any stones might be visible. January 28 he had an u/s and it did show a 3mm stone. In-depth kidney analysis (via blood sample) showed some low numbers for something that I forget what it's called. It seemed "odd" to the ONC, but not concerning, but worthy of follow-up. She has been in touch with the nephrology department at BCCH to see what to do about the oddity. Special urine sample was sent to BCCH on Feb 4 but we learned yesterday that the sample was of insufficient volume, so it will be redone at our appointment in two weeks. Until then, we work very hard to make sure he gets a minimum 1600 mls of fluids each and every day. Our Onc and the nephrology folks at BCCH would like to find out what is causing him to retain excess calcium and create stones. He could be developing stones that usually dissolve, but this one got a bit bigger. The plan to deal with the stones would be to adjust his diet and continue pushing lots of fluids to help his kidneys flush properly. His symptoms are very sporadic so it's not an alarming or urgent matter, but not one that should be ignored.

Other than all of that business ... he seems the picture of health.  He's full of energy, constantly on the move, making us laugh and charming all the ladies. He seems to be over the virus that popped up last week, ending it off with a two hour nap on Sunday morning. He woke up around 8:30, took his meds, and headed right back to bed with a headache. Of course that sent my head spinning for whatever could be causing him discomfort, but he woke up happy and hungry as ever. I spent extra time taking his temp and frequently touching his forehead, watching for signs of fever. Thankfully, none!

The effects of the Dex are a funny thing. (Long-term side effects of Dex are not funny at all, but we'll deal with those if and when they come.) While on Dex and for several days to a week following, he has very little control over his temper. 'Roid Rage' really is a thing, this I know for sure! His hunger becomes insatiable. He wants something all the time. He either knows exactly what he wants and who shall prepare it and how it shall be served and who is allowed in the room while he eats it and who is allowed to watch him eat it ... or he has no idea what he wants. For him the not knowing what to eat is agonizing! For me, I'm not sure which is more tiring - the constant short-order cooking to keep up with his cravings or trying to come up with something, anything that might possibly, even remotely appeal to him. While the temper and hunger are most intense for about 10 days of the month, I notice that he also struggles with anger while not "under the influence". It becomes a learned behaviour that we need to curb when we know that the Dex is not immediately to blame. The hunger thing ... I dunno. He's super hungry on Dex, and just regular-old-really-hungry the other 20 days of the month.

Watching traffic with brother and friend.

* melt * 

Ice skating lessons with brother Marty!
He's also signed up for T-ball, to start in April.

He counted them ... at least 28, I think. 

Playdough pizza. Play imitates life. So hungry, all the time!