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.

Nailed it!

This high flyer is doing great! 

His immunity is still low but his energy is not low or lacking!

Hard to believe he's just completed 

the second most gruelling 

phase of his treatment.

Laying low on DI Day 44

We had a quiet morning at home after a long clinic day with Jaxon yesterday. He and I went for his planned visit to check his counts and, as expected, he required a red blood cell transfusion. His HGB was 80, the point when transfusion is considered. We could have waited until Friday to transfuse, but we decided to go ahead with it yesterday. 4 hours well spent - his lips are pink again! 

Jax got this 276.1 ml donation of blood yesterday.
It is A+ Packed Red Cells, all from one donor.
He might need more on Friday. Or perhaps platelets.
Canadian Blood Services is reporting a critical nation-wide
shortage of blood products, particularly types A and 0.
If you are able ... Please give!
Canadian Blood Services

"Someone in Canada needs blood every minute of every day and CBS regularly collects 17,000 units of blood per week. The agency immediately needs 7,500 blood donations on top of the regular weekly totals to replenish the inventory."  Read more ...

Also as expected, his ANC (immunity) continues to decline as a result of the chemo from the past two weeks. He's now at a critical low of .23 ("normal" is 1.5 and above). As much as we wanted to go take part in the Tour de Rock Cops for Cancer event in our town today, we decided to stay home as the risk of infection from being around others is just too great. We only heard about the event yesterday evening, so it was too late to make any arrangements. I'm going to look into ways we can be involved with the Tour next year. 

Riders between Ucluelet and Nanaimo, Sunday Sept. 28/14
Photo swiped from Cops for Cancer BC Facebook page.

Our buddy Lucas got to take in the festivities in Nanaimo. We are 
so very thankful that he's finished treatment, feeling good and lovin' life!

{Lucas and his lady friend.}
Photo swiped from TC article linked above.

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. 

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.