Mercaptopurine (6-MP)

Mercaptopurine (click for more info) is one of the cornerstones of treatment for Acute Lymphoblastic Leukemia in children. Jaxon started taking it during the 28 days of Consolidation, the second month of frontline treatment (May 15 - June 11/14), then not again until he began long-term maintenance in December 2014. He took it nearly every day for the next 900 or so, only skipping about 12 doses due to low counts. 

For the majority of his treatment, he was required to take 6-MP on an empty stomach. It was generally believed by most of the VIPs of childhood cancer treatment that food, especially dairy and citrus, interfered with the absorption of 6-MP, thus jeopardizing its efficacy. This was manageable during Consolidation as I would just wake him up at around midnight, give the meds, and back to sleep he went. 

During LTM, when he had 5 days of steroids and about 5 days of steroids-hangover, it became much more difficult. With unstable emotions, difficulty making decisions, trouble falling asleep, ever-changing food cravings and aversions ... it was really hard to maintain a dose of meds given on an empty stomach. It was a big ask to send the boy to bed hungry when he had spent the whole day not sure of what he wanted to eat and then he FINALLY made a decision. Saying no because it was almost medicine time was just not going to fly. He was supposed to take the 6-MP at as close the same time of day as possible. All that to say, I spent 2.5 years rousing him from his sleep 2 hours after his last bite to eat, just enough to give the meds, and making sure he swallowed fully before laying back down to sleep. I think we might have switched between giving it in the morning and the evening, but for the most part it was done around midnight. That was also encouraged because of the nausea that often came along with the dose. Sleeping it off was better than toughing through it in the morning.

As with the Dex, we started with liquid 6-MP. We only did that for the first round of it in Consolidation. Again, the volume of it plus something to mask it (we used a touch of chocolate syrup during Consolidation) was just too much. We learned that the tablets were easily dissolved in just a tiny bit of warm water, so we changed tactic once he started LTM.

Medicine box during Consolidation.

This photo and all the ones below were taken during the last week of oral chemo!
On Thursdays he also took a dose of oral methotrexate, except for the 1st week
of every 85-day cycle when he received MTX into his spine via an LP.

I was supposed to wear gloves and a mask even just to open the bottle of 6-MP. I did not comply. Parents of kids on chemo who wear diapers are supposed to wear gloves to change them. :( I got very good at pouring the pills from the bottle to the daily box, then from the box into a 5ml syringe. I would pull about 3ml warm water from a tiny glass that I used only for that purpose. I'd cap the syringe and shake it until the pills dissolved. Carefully remove the cap so it didn't splash, remove all the air, pull a tiny bit of Mio water flavouring (orange only! to mask the taste), replace cap and shake again. If you've ever seen one of those little water flavouring bottles you can probably imagine why it worked so well. All without touching any! I could even get them split in half (he took 1.5 pills for a long time) without touching anything. The pill splitter and box went to the biohazard garbage at the hospital when we were done with them.

Label removed, clearly marked with warnings, and kept tucked away in the medicine box.

We called it "drinky medicine".
(Never to be confused with "sleepy medicine"!)
I would carefully remove the cap and he'd suck it up.
By the end of treatment, he was a total pro.
But still, to this day, he will not swallow a pill.
Lots of kids, even really little ones, can swallow their pills with no problem.

Just a few months before his end of treatment date, the powers that be decided that there was no clear advantage to taking 6-MP on an empty stomach. "The Moms" (our oncologist worked really hard not to roll her eyes when I mentioned "The Moms" from an online support group I'm a part of) had been talking and swapping stories for months about how some hospitals lifted the food restrictions around 6-MP while others had not. Every month I'd ask her if she'd heard anything official, and every month it was ... "not yet".  It was such a relief when we finally got the go-ahead to take the 6-MP with food. What a difference it would have made for the previous 800+ doses. We're so glad that new patients don't have to experience that part of it.

This was the penultimate dose.
There was always a bit of residual medicine in the syringe so we always
pulled two extra syringes worth of the warm water in to get it all out.
Syringes went into a biohazard box that we returned to clinic when it was full.
I felt awful with the amount of syringes we went through, but it was just what worked for us. 

Sunday June 11, 2017 was a great day for dinner at friends-who-are-family's house.
They got to celebrate his last dose of chemo with us. It was pretty exciting.
He swigged it back and rode off into the sunset on a borrowed bike, and no helmet.

These friends ... there with us through it all! 

That's our story about mercaptopurine.

counting down

APRIL 4, 2017

May 24, 2017

MAY 29, 2017

JUNE 5, 2017

this is the face ...

... of a very unhappy boy!

Jax started coughing a really harsh dry cough on Monday morning. We already had an appointment at our clinic in Victoria for later that afternoon so I wasn't too concerned. He just had a dry cough and no other questionable symptoms. He handled his ventolin and inhaled antibiotic really well and we made our way to Jeneece Place for the night. He had a good night and we went to his chemo appointment as planned on Tuesday morning. It was a long day with an LP and IV chemo. Nurses and Doc listened carefully to his chest and it was all clear, so they advised me to just watch him carefully as the week went on, especially after his Dex wore off early next week. (Dex elevates his white blood count, so once the elevation wears off, viral illnesses can become more intense.) The cough lingered and then on Thursday he started having a stuffy nose. Since he's always more sensitive and moody while on Dex, adding in the illness has made him a very grumpy bear.

Friday night he hardly slept at all. Coughing non-stop. Ever since he was just little, he tends to cough so hard that he vomits. That's been in full force this week too. Yuck. He was so miserable last night, and we couldn't give him anything to help him feel better, since Tylenol is a no-go for someone with a VAD. We can't give it because it can mask a fever which could lead to missing out on catching a bacterial infection. A bacterial infection can be very dangerous for someone who is immune-suppressed. 

Because his VAD line goes directly into his heart, 

we have to take fevers very seriously. Every time. 

He begged for the morning to come so he could get out of bed and lay on the couch. He finally napped late this morning but when he woke up I could tell his temperature was significantly elevated. I had checked a few times through the morning and he was always within normal range and this time when I checked it was 39.4. I've never seen his temp go that high so I jumped into flight mode. I grabbed a few things, put Emla (numbing cream) on his port and got him packed up to go. Paul had taken the car into Lake Cowichan so I called him to get home right away. He swooped in and helped me get everything ready to go and called the hospital to let ER know we were on our way. 

Once we got there he was seen by triage right away and his temp was a bit lower but hovering very close to the threshold to begin what's called Clinical Order Set - Fever and Neutropenia Protocol. Long name with a bunch of steps to take for a chemo patient with a fever. We were soon given a private room and nurse and doc saw him right away. His temp was still so very close to the magic number that they decided to begin antibiotics. He got some tylenol and codeine (supposedly has cough suppressant properties), chest x-ray (looks good), and first dose of prophylactic antibiotics to cover any bacterial infection that may be brewing. He was seen by the pediatrician on call, who agreed with the ER doc that it's a standard cold virus but protocol would continue until blood cultures have been 48 hours to show any signs of infection.

The nurses decided not to use his VAD port for drawing the bloodwork. I was happy they didn't want to access his port unless necessary, but not happy about having to tell Jax that he'd be getting an arm poke without any numbing cream. He agreed to it on the promise I gave that the lady knows what she's doing and it wouldn't be as bad as he anticipated.

It was bad. 

She missed his vein the first time and spent a minute re-aligning to try to make it work, but to no avail.  The plan after that was to give Jax a break, put Emla on the other arm, and have a different tech come attempt the IV. 15 minutes later that happened and she got it on the first try.

Not long after that we had to get going with accessing his VAD. Sadly, the Emla I had put on it at home 3 hours prior had lost its potency so he felt the pinch on that one also. 3 pokes with very little numbing is hard for a boy who usually doesn't have to feel much from pokes. 

As grumpy as he was, he was rocking some totally rad bed head.

Once the meds kicked in he started to feel much better.

We're thankful this didn't happen in the middle of the night, thankful that this is a rare occurence for us (only his third fever since diagnosis in April 2014), and thankful it seems to be viral and he'll come through just fine. Many oncology patients and their families spend countless days and nights in the ER and admitted to hospital, dealing with serious infections and complications from the powerful medications used to attempt to restore these kids to health. I just found out that our little buddy Marek was in ICU for 9 days this past month. That could just as easily have been our situation.

As I write this he's been asleep for about 2 hours with just a few coughs. In a strange twist ... now that I'm actually allowed to give him Tylenol to make him more comfortable (because he's already getting antibiotics and blood cultures have been drawn) ... he's refusing to take it. He did accept a Gravol though, so there's that. I can tell he's having a good sleep because he's doing the cute little sigh-coo thing that he does when he's sedated for his LPs.

After his LP on Tuesday, in his loopy state, he said "That was fun! That was the best back poke ever! Mom - you have FOUR eyes, TWO noses TWO moufs ... and ONE CHIN." (Yay, just one chin!)

The Long Haul (LTM)

On December 11, Jaxon began Day 1 of Long-Term Maintenance (LTM) at BCCH in Vancouver. I haven't written much about this phase leading up to it for a few reasons. One reason is that the treatment plan up until then was really super complicated, and the other is that there were further confusing details surrounding the Long-Term portion of his treatment.
(Plus, it just seemed so far away!)

"Frontline" treatment for Average Risk Acute Lymphoblastic Leukemia ...
Induction (4 weeks) 
Consolidation (4 weeks)
Interim Maintenance 1 (IM1 - 8 weeks)
Delayed Intensification (DI - 8 weeks)
Interim Maintenance 2 (IM2 - 8 weeks)

Hard to believe that we made it through all that with very little delays, setbacks or complications. We are so grateful for that, knowing that things could have gone very differently.

December 11, 2014 - Day 1 of an 85-day cycle to be repeated approximately 10 times, until spring/summer 2017, about 30 months. (30 months because he's a boy. Girls get one year less LTM because they don't have test!cles. Having test!cles makes boys susceptible to a relapse of the Leukemia so they get chemo for a longer time to make sure every last abnormal cell is eradicated.) 

He's had 37 weeks of treatment since diagnosis on April 10. Granted, those 37 weeks were considerably more intensive than these next 30 months are anticipated to be. We hope and pray that as much of that as possible will be uneventful cancer-butt-kicking. There are absolutely no guarantees that it's now smooth sailing. We must remain vigilant to protect him from "every day" illnesses, no matter how seemingly insignificant as they can lead to a multitude of the aforementioned (and thankfully avoided thus far) delays, setbacks, and complications. Until the end of his treatment, if he spikes a fever, he needs IV antibiotics within 30 minutes, as he could very rapidly crash into septic shock. That's why we are cautiously selective when it comes to social interactions and why we ask you to consider the ways you can help reduce the spread of illness. (Flu shot, anyone?)

Here's the rundown for LTM ...

• Daily oral chemo at home (for NINE HUNDRED DAYS, give or take a few)
(Mercaptopurine aka 6MP: 50mg M-Th and 75mg Fri-Sun)

• 3 days weekly antibiotics to help prevent PCP Pneumonia
(Septra: 40mg twice daily for 3 days every week)

• Weekly oral chemo at home (Methotrexate: 3 x 10mg tabs every Thursday)

• Monthly IV chemo at hospital (Vincristine: 1.2mg) Next one Jan. 7

• 5 days every month of oral steroids
(Dexamethasone: 2.5mg twice daily for 5 days)

• Lumbar Puncture (LP or spinal tap) one every 3 months (to check spinal fluid for cancer cells and to  inject chemo into spinal fluid, because IV/Oral chemo does not cross the blood/brain barrier). He had an LP on Day 1 of this cycle and the next one is scheduled for March 4 - Day 1 of the next cycle.

And to spice things up - the daily 6MP and Methotrexate need to be taken on an empty stomach, and the 5 days of steroids every month make him ravenously hungry for about 10 days every month. Good times!

Bloodwork on Dec. 22 confirmed that the at-home meds are properly balanced. Off to a good start.

Since the end of May, the majority of his treatment has been done at the Pediatric Oncology/Hematology Outpatient Clinic at Victoria General Hospital. There, we have a fabulous Pediatric Oncologist and exceptional nursing team. We are required to see our Oncologist at BCCH in Vancouver once every six months. We are fond of the team at BCCH too, but it's so nice to get most treatment closer to home.

Soon, I plan to write about his participation in a clinical trial that is ever-so-slightly tweaking the recipe for the chemo cocktail for kids with ALL, with a goal to see if less of some meds and more of another med will result in better long-term survival rates with less incidence of long-term side effects.

On the eve of his last ARAC

We have now nearly finished Jaxon's second round of IV-ARAC (cytarabine). Since beginning this phase (Delayed Intensification) on August 8, he has had a cocktail of 8 different chemo drugs (plus oral antibiotics 2x daily, 3 days a week). After the last dose tomorrow, he will have received ARAC on 8 of the last 11 days. The first four days were more difficult as he also received Cyclophosphomide on the first of those four days, and it is known to be an intense tummy troubler. Even with strong (and expensive!) anti-nausea meds, he had an upset tummy and usually a headache every day for those four days and 2 days after. This week's round has gone much better and he has not had any bouts of nausea. The car ride down here took longer than expected as I had to stop 3 times for him to puke. On Thursday of the first week, we stopped for about half an hour on our way home for a roadside snuggle while we waited for the Gravol to kick in. 

Both last week and this week we have stayed at our home away from home in Victoria, Jeneece Place. (More details about JP to come later when I can post from my computer.) Big bro Marty came with us this trip, which has been a nice distraction for Jax. 

Nothing like several sibling squabbles to help remind us that life moves along despite all the upheaval that Jaxon's illness and treatment brings to our family. Max has been spending time at home with Paul and my Dad as they continue work on our house, and my Mom is enjoying a reunion with her nursing class here in Victoria. Paul's mom is at home, enjoying a much deserved break from living in her trailer at camp and the chaos of renos and helping to care for the big boys while I am focused on Jax. 

Back to details about Jaxon's treatment schedule ... Because the ARAC is so effective in making cancer unwelcome, it also does a doozy to Jaxon's healthy blood cells. His ANC (immunity) is on the decline (.60 ish on Monday) and his platelets (blood clotting powers) are also trending down, he'll need to have his counts checked regularly for the next few weeks, in case a transfusion is required. His hemoglobin is slipping lower as well, which would require a transfusion if it drops drastically. It is more often the case that transfusions are necessary, than not. Consider this your friendly reminder to donate, if you are able! We'll be back here in Vic on Monday and Friday for the next two weeks to check his counts. 

That will take us to the Thanksgiving long weekend and the end of this 8-week phase of DI! 

Interim Maintenance 2 is next. It will bring us clinic appointments every 10 days for 8 weeks for IV Vincristine and IV Methotrexate, as well as 2 LPs (lumbar puncture/spinal tap) - one on Day 1 and one on Day 31, both only happening when he has a minimum of .75 ANC and 75 platelets. It is likely that he will have a one or two week delay before beginning IM2, while his blood cells recover from all the chemo of this current phase. IM2 could start anytime between mid-late October. (I need to update my side-bar, he's now had 9 LPs.)

Renovations at home are continuing at a steady pace! For updates about that, check out Paul's blog ... More Than a Maintenance Man.

done with DEX {for now}

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.

The Roadmaps - DI & IM2

The Six Stages of treatment for A.L.L.
Induction (4 weeks) *completed*
Consolidation (4 weeks) *completed*
Interim Maintenance 1 (IM1 - 8 weeks ending 8-07-2014)
Delayed Intensification (DI - 8 weeks beginning approx. 8-08-2014)
Interim Maintenance 2 (IM2 - 8 weeks)
Long Term Maintenance (2.5 years)

* Roadmaps for Induction, Consolidation, IM 1 detailed here. *

Delayed Intensification (DI) 56 days beginning approx. August 8
Jax will have peripheral blood work (from the arm, like a routine blood test) in Duncan, first thing in the morning on August 7 to see if his ANC and Platelets are high enough (ANC @ .75 and Platelets @ 75). Within an hour, we'll know if he reaches those criteria and will then immediately travel to Vancouver to begin Delayed Intensification at BCCH on Friday, August 8.  We need to go to BCCH for this procedure as our Oncologist in Victoria will be away on holidays, and there is no one else in Victoria who can administer the intrathecal methotrexate.  We have to be there for the Pegaspergase on Day 4 (Aug. 11) anyway, so it's not an extra trip - just a weekend at the new 
Ronald McDonald House in Vancouver!

If his counts don't reach the minimum required to begin this phase, we'll try again in another week.

This phase of treatment is aptly named, and likely to be the roughest stretch since the first 6 weeks.  He will receive a cocktail of 8 different chemo medicines over these 8 weeks, in addition to oral antibiotic (Septra) taken every Fri/Sat/Sun for the duration of his three year treatment, to protect against a certain kind of pheumonia that immunocompromised patients are susceptible to. 

He's going to feel really crummy. Two of the eight drugs in this phase are known to severely affect his ANC (immunity), which will reach all-time lows for several lengthy stretches. We will have to be extremely vigilant about any possible exposures to viruses and bacteria. He will most likely lose the rest of his hair. 

Day 1: *count dependant - ANC > 0.75 & Plts > 75 *
IT MTX (Sedated - Intrathecal Methotrexate)

IV VCR (Vincristine)

IV DOXO (Doxorubicin)
This will be a very long day, as the LP for IT MTX takes quite some time and the DOXO requires substantial hydration before, during and after administration, so that his kidneys can properly flush the medicine.

Day 4:

IV PEG-ASP (Pegaspargase)
This drug is known to trigger allergic (and other) reactions, and only certain hospitals have authorization to administer it. He has had it once before, on Day 4 of Induction, with no reaction. However, subsequent doses are more likely to trigger an allergic reaction.

Days 1-7:

Oral DEX (Dexamethasone)
Oral Ranitidine (to protect his stomach lining from the DEX)

Oral Liquid Sweetener ("Orasweet" - to protect his taste buds from the awful taste of the Ranitidine)

Day 8:

IV VCR

IV DOXO

Day 15:

IV VCR

IV DOXO

Days 15-21:

Oral DEX

Oral Ranitidine (to protect his stomach lining from the DEX)

Oral Liquid Sweetener (to protect his taste buds from the awful taste of the Ranitidine)

Day 29: *count dependant - ANC > 0.75 & Plts > 75 *

IT MTX (sedated)

IV CPM (Cyclophosphamide)

IV ARAC (Cytarabine)

Days 30-32 & 36-39

IV ARAC

Days 29-42

Oral TG (Thioguanine)

Interim Maintenance 2 (IM2) 
56 days beginning approx. early October
IM2 is almost identical to IM1, except that it has one additional IT MTX (sedated lumbar puncture/spinal tap).

Day 1 *count dependant - ANC > 0.75 & Plts > 75 *
IT MTX (sedated)
IV VCR
IV MTX

Day 11
IV VCR
IV MTX

Day 21
IV VCR
IV MTX

Day 31
IT MTX (sedated)
IV VCR
IV MTX

Day 41
IV VCR
IV MTX

Long Term Maintenance will begin on Day 57, or when ANC and Platelets reach .75 and 75. More about LTM in another post, as it gets a little bit complicated. He will be on one of four potential treatment protocols.

April 16

Jax and I had a good sleep. He was surprised to hear it was morning time already. He's starting to experience some jaw pain, a known side effect of the chemo (Vincristine - VCR) he received on Saturday. These folks are very generous with morphine so he's sleeping again, awaiting it to do its thing so he can enjoy his much anticipated bagel with cream cheese for breakfast. Our days are pretty quiet. Lots of playing laughing and eating. Oh my, the eating! Constantly hungry. iPad, iPod, iPhone, Leap Pad, movies, Lego, an inflatable rocket ship ... So far the benefits outweigh the discomforts for him! Tomorrow sometime he will have his second dose of chemo that gets injected into his spinal fluid. The fluid does not show any cancer, but cells can hide there undetected. The injection is necessary to kill any stowaways, as the IV chemo does not cross the blood brain barrier into the nervous system. He will be comfortably sedated for this procedure. Thank you for all the notes of encouragement. Keep 'em coming!

Persnickety

My answer, when asked how Jax is responding to the chemo ... "Great! The steroids* are more problematic right now as they make him rather demanding and generally persnickety."

*Heavy dose of Dexamethasone (DEX) - a powerful cancer-fighter!