DI - Day FIFTY-SIX!!!

We've known all along that this would be no walk in the park. No cake walking here. A whole lot of really crummy things that we had no choice but to allow/force our boy to go through. We have had to make his life really miserable for a lot of these past six months ... to save his life. We don't dwell on the life-saving part with him (at all). We talk about how we need to do these hard things, there will be sad days, we need to keep on doing what we need to do ... to make sure the cancer goes away and doesn't come back.

Treatment for Leukemia is complicated and extends over several years. 2 years for girls, 3 years for boys. You can guess about the extra bits that boys have that requires them to have an extra year of treatment. Around here they've been called nuggets, tenders, and today ... batteries.

Remember the Roadmaps? Here and here. (See the blurb in my side bar for a quick refresher on the six stages of treatment for A.L.L.) We've been plugging away through the first few stages, with the daunting and aptly named "Delayed Intensification" looming just beyond. It's known to be a difficult phase because of the myriad of chemo drugs that are used, and how they affect the unhealthy and also healthy cells in the body. Each drug used in DI focusses on a the varying stages of cell growth.  It was indeed quite gruelling with lots of appointments either to receive chemo or to check his blood work to see how the chemo was affecting him. He was often nauseous and the thought of one more poke in the arm or in his "button" is starting to send him running to hide. This stage was the one that we officially said "see you later" to his hair. We have been on edge, watching for fever and other signs of illness the most this phase, because he's had low counts for several weeks, and they could stay low for another few weeks.

And now? Apart for waiting for his counts to climb back up, it's over! DI is behind us! His hair is growing in again and his energy is almost boundless. He plays tricks on our clinic nurses and he's chomping his weekend meds like it's candy. (Only because I have embedded it in candy!) He still doesn't like to do it but he's much more compliant than in previous weeks.

Two of drugs he received in weeks 1-5 of DI are known to have a double-whammy punch on his counts, particularly ANC (immunity) and Hemoglobin (oxygen couriers) and Platelets (stop the bleeding!) His counts on Monday the 6th were strong enough that our team agreed we could get his blood work checked in Duncan to make sure he was good going into the long weekend.

He received his last dose of ARAC on September 25. His counts could take up to 28 days following that dose to fully recover. Here's the rundown of his counts the past few weeks:

Sept 29:
ANC 0.23
HGB 80
PLTs 77
*Red blood cell transfusion, please and thanks!*

Oct 3:
ANC 0.15
HGB 112
PLTS 60

Oct 6:
ANC 0.40
HGB 101
PLTs 200

Oct 10:
ANC 0.33
HGB 109
PLTs 407 *!*

He is scheduled to begin Interim Maintenance 2 on Tuesday of this week. It will only begin if his ANC is equal to or greater than 0.75 and platelets are above 75. PLTs look like they'll be alright, but not sure about the ANC. He was fighting a slight cold at the time of that blood work, which would lower his ANC. I think. We will plan for the start of IM2 on Tuesday, but are prepared that he may have a delay of a week or even two while his ANC fully recovers.

I found it a bit humorous to receive a call from our family doctor's office on Friday, but since our Dr. is away, it was a locum who called. He was calling to tell me that he had reviewed the results for Jaxon's bloodwork and that his Absolute Neutrophil Count was critically low, and did I understand the ramifications of this and the precautions I needed to take? I assured him that I had already discussed the results with our Nurse Clinician in Victoria and that we are well prepared in the even that Jaxon should strike a fever.

end of ARAC

Nearing the end of Delayed Intensification!

As expected, Jaxon's healthy blood cells took a pummelling along with the big bad leukemia cells that the last two weeks of chemo was targeting.

As of Thursday:
ANC - 0.37 (marked on the lab report as "critically low")
HGB - 88 (down from 100 three days prior)
PLTs - 165

As soon as we arrived at clinic on Thursday morning, our Nurse Clinician (Anne xo) said that he looked much paler that day and that his HGB is definitely declining. Though 88 is low, and it took quite a jump from Monday's CBC (complete blood count), it wasn't so low that an immediate transfusion would be required. He is scheduled for a red blood cell transfusion first thing on Monday morning. A CBC prior to transfusion will determine if he will need a platelet transfusion as well.

The ANC is expected to drop to nil. For the next two weeks we need to be hyper-vigilant in reducing his interaction with other people. Even if he is in close proximity to someone who is not symptomatically sick - they could still be ill with something and pass it on. It's a tricky, slippery slope! After about two weeks, his counts should begin to recover and we can go back to just being totally paranoid about germ transmission.

We'll be going to clinic on Monday and Friday for the next two weeks to keep an eye on his counts. Remarkably, even with his super low counts right now, he's been really energetic and feeling good. He's a bit crabby but can we really blame him for that?!

We hope his counts will be good enough to begin Interim Maintenance 2 on Tuesday, October 14.

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.

Let's try this again.

Tomorrow is attempt #2 for starting the second half of DI. Day 29 can only happen when ANC and platelets reach .75 and 75, respectively. Last Monday he was too low at only .30 ANC. It was to be expected as the DOXO can stay in his system for 3-4 weeks. 

The chemo vacation was really nice. He's just now coming out of the steroid hangover, two weeks after his last dose. His mood is stabilizing and he's making reasonable, though still frequent, food requests. This round of steroids also brought a new side effect - the giggles! Uncontrollable and contagious. Even a bit irritating to a particular brother 2.5 years older than him. It's been pretty funny, and a nice break from the constant crabby-cakes. He was still plenty mean, nasty and unreasonable at times of this last round but the breaks of glee were really nice. I'll post a video later of some recent brotherly hilarity. 

I gave him a buzz cut last night, likely the last one for a loooong time. His hair has shed much more than it did during the first few months. It will all be gone soon. He was getting itchy often from the hair falling out and in a fleeting moment of willingness, he agreed to a cut. Hopefully now we can finally get rid of the cradle cap he's had all his life. 

We are now at Jeneece Place in Victoria, ready for tomorrow's appointment for blood work, hoping chemo this week is a go. If it is, he'll have an LP (IT-MTX) and then IV-ARAC tomorrow, then 3 days of IV-ARAC. 3 days OFF then back to Vic for another 4 straight days of IV-ARAC. 

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.