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.

that was a very long day

November 12th
Interim Maintenance 2 - Day 31 {of 56}

We often have loooooong days in the clinic at our sort-of-local hospital in Victoria, or at BC Children's. Most clinic days are long-ish. I rarely make any other plans on clinic days. Anything extra that gets accomplished is a bonus. We usually know when a day will be exceptionally long, but sometimes we don't. Last Wednesday (IM2 Day 31) was one of the days we were there much longer than expected. Jax had a scheduled LP (#11 - only about 11 more to go between now and June 2017!) and additional IV chemo. The LP always gets done first. Jax, Marty and I slept at Jeneece Place the night before so we'd have an easy morning before the appointment. We got to the hospital at about 8:40 and began the process of weighing, measuring, vitals-taking, port accessing, waiting around for bloodwork results. This visit also required fasting since he'd be sedated for the LP. By about 10/10:30 we learned there was a delay as the pediatric intensivist we needed for Jaxon's sedation was in the ICU with a child in an acute trauma situation (ill or injured, I'm not sure). At 11:00 we learned that the earliest possible time for Jax's LP to go ahead was 1pm. Ugh. That is a long time to be waiting around, not eating. Marty and I didn't eat or drink in front of Jax since we was not allowed. I managed to sneak out and get Marty some cereal, and then later a bagel that he ate in another room. I got my tea before my didn't-have-my-tea-yet headache could kick in. I even managed to get to the cafeteria for the famed Butter Chicken that is only served on Wednesdays. It was really, really tasty. I ate it outside Jax's room. By 12:30 he was getting super duper antsy, hungry, thirsty, and thusly - cranky. The intensivist did indeed show up at 1:00 so we were able to get the LP going. I'm amazed at what our oncologist can do in a span of just a few minutes after Jax falls asleep. She accesses his cerebrospinal fluid, harvests a small vial of it for analysis (has always been cancer-free), and injects 8mg of chemo directly into his spinal column. This is done because IV chemo does not cross the blood/brain barrier so any sneaky cancer cells hiding in there would have free reign.

The LP procedure finished in record time and he woke up quickly. He had to stay horizontal for an hour to prevent a headache and to allow the medicine to spread out in his spinal fluid. Once he was no longer seeing double, thanks to the sleepy meds he had, TV watching ensued. We had the "private suite" for the day, because of the LP and the entourage of medical folks that come along with it. Marty made himself quite at home in the treatment room beside us with a DS, blankie and pillow on the couch.

As unpleasant as the hungry waiting-for-a-spinal-tap was, I was comforted knowing that my child was not in an urgent care situation, and the thought of the other family going through a time of umcertainty put our delay into perspective.

Heather, Child Life student, came with Christmas crafts for the boys.
Each decorated a clear ball ornament and Jax did an extra one that
will be on a special tree on display at the Empress Hotel!

IV chemo of the Vincristine and Methotrexate variety were administered in short order, and we were soon on our way. We left by about 3pm and headed to Jeneece Place to pack up and head home. Jax fell asleep in the stroller on the 5 minute walk from the hospital to JP, and slept about another hour while I packed and loaded the car. He woke up just in time to realize he didn't get to play on the outdoor riding toys at JP but was consoled by the promise of pizza on the way home. Both boys then napped in the car. It was a late bedtime that night as they were full of energy from all that snoozing.

Jaxon's next treatment (IM2 Day 41) is Monday, November 24th, which also happens to be my birthday. He and I will spend the day at the clinic then we'll head back home for our Imadene Staff Family Christmas Dinner Extravaganza.

Following that appointment, the next big day is bloodwork on December 9 to see if he's good to go to start LONG-TERM MAINTENANCE in Vancouver on December 10. If he passes his blood test, he and I will go straight to the ferry. I'm hoping we are able to stay at RMH for that night and the next one.

The protocol for rest of Jaxon's tratment, Long-Term Maintenance is yet to be determined. He is part of a large study about the best way to treat ALL with successful outcomes and minimal long-lasting side effects. He will be on one of 4 arms of treatment and it's really confusing to try to explain, but I'll do my best ... but that's another post.

Sometimes I forget that he's fighting the greatest battle of his wee little life ...

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.

The Roadmaps - Induction to IM1

In the early days of Jaxon's treatment, we were given reams of paperwork to review and dozens of documents to sign. Part of the information we received is what they call in the biz, The Roadmaps. It's very official and medically written, but we've since learned how to make sense of it all. It outlines the medicines used in each phase of treatment, how they are administered (by mouth, IV, intrathecal ... ), what days they are administered, important notes for physicians, and what bloodwork or other tests are to be completed prior to, or after administration. 

Jaxon is on a treatment protocol for Average Risk Pre-B Acute Lymphoblastic Leukemia. (AALL0932).

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

Induction (approx. 4 weeks duration, Diagnosis April 10 - May 14)
Day -2 (@ diagnosis) 
Complete Blood Count (CBC)
Under sedation:
Bone Marrow Biopsy
Intrathecal Cytarabine - IT ARAC (injected into spinal fluid)
Spinal Tap to check for cancer in his Central Spinal Fluid (CSF) *all clear!*

Every time he receives chemo into his CSF, a sample is taken to check for cancer cells.

Day 1 (Saturday, April 12, 2014)
Surgery to place Vascular Access Device (VAD)
This is used to draw routine bloodwork and to administer fluids and medication as needed.
IV Vincristine (VCR) 1.1mg 
Oral antibiotic (Septra) taken EVERY Fri/Sat/Sun FOR 3 YEARS! To protect against a certain kind of pheumonia that immunocompromised patients are susceptible to.

Day 4 - April 15

IV Pegaspargase (PEG-ASP)

Day 8 - April 17
(Bumped ahead by 2 days because the actual Day 8 landed on Easter weekend)

IV VCR

Methotrexate (IT MTX - sedated, injected into CSF)

Special bloodwork to determine response to chemo (Good results!)

Day 15 - April 25

IV VCR

Day 22 - May 2

IV VCR

Days 1-28
Dexamethasone (DEX) Oral steroid, a powerful cancer fighter

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 - May 8

Under sedation:

IT MTX

Bone Marrow Biopsy to determine response to chemo (Remission!) 

No further bone marrow testing will be required.

Consolidation (4 weeks, May 15-June 11)

Day 1 - May 15

IV VCR

IT MTX (sedated)

Day 8 - May 22

IT MTX (sedated)

Day 15 - May 28

IT MTX (sedated)

Days 1-28

Oral Mercaptopurine (6-MP)

Interim Maintenance 1  (IM1) 56 days began June 11

Begins only when ANC is at .75 or greater. His was .76, so no delay!

Day 1 - June 11

IV VCR

IV MTX (IV Methotrexate, given in escalating doses as long as ANC & Platelets reach criteria.

He began with 70 mg.)

Day 11 - June 20

IV VCR
IV MTX - 110 mg

Day 21 - July 2

IV VCR

IV MTX - 110 mg (His ANC was .60, so dose was not escalated.)

Day 31 - July 14

IT MTX (sedated)
IV VCR
IV MTX - 150 mg

Day 41 - July 23rd

IV VCR

IV MTX - 183 mg

He also had an ECG and an ECHO to get a baseline of his heart structure and function, as one of the drugs used in the next phase of treatment (Doxorubicin - DOXO) is known to affect heart function in some patients. Based on the small dose Jaxon will receive as part of his treatment, it is unlikely that he will have any heart issues down the road, but because it is a known side effect, testing needs to be done prior to receiving DOXO. His cardiac function will be monitored during treatment, and will be regularly tested for the rest of his life. 

We are now enjoying a chemo vacation, as there is nothing scheduled for the rest of this phase. He will have peripheral blood work (from the arm, like a routine blood test) first thing in the morning on August 7 to see if his ANC and Platelets are high enough (ANC @ .75 and Platelets @ 75). If he reaches those criteria, we will travel to Vancouver to begin Delayed Intensification at BCCH on August 8.  This needs to be done at BCCH as he needs an LP (Lumbar Puncture to administer IT MTX) and our Victoria Oncologist will be on holidays. We already knew we would have to be at BCCH on Day 4 of DI for Pegaspargase, so we're just going a few days early and making a weekend out of it. We've booked a room at the new Ronald McDonald House!

May 15 - LP/IT-MTX

9:28 am
Waiting with Jax in the Oncology Clinic for his LP today. They are running behind and he's tired of waiting with an empty tummy! He wants his breakfast but must wait, could be another hour yet. Toopy and Binoo are only a mild distraction.

No tests today, just a dose of chemo into his spinal fluid. He'll be getting one today and two more over the next two weeks. Has already had 3 since diagnosis. His spinal fluid has always been negative for cancer, this is standard procedure as a precaution as the IV chemo doesn't cross the blood-brain barrier.

11:06 am
All done now, waiting for him to wake up from his power nap, then it's brunch time!

physio, poop, bikes, next phase, going home

Jax had a really good day! We spent some time with the physio lady again, and he had some fun (despite his reluctance) and showed signs of increasing strength in his core and leg muscles. He's taking small assisted steps, is sitting on his own, and went for another bike ride this evening. The seat was causing trouble for him as he doesn't have much padding on the rear end, so the lovely lady from the Occupational Therapy Dep't customized a cushion for his toosh. Hoping he'll venture farther on the bike tomorrow. We have another appointment tomorrow morning with O/T and Physio. He tires and gets frustrated easily, so please pray he is eager to do the games and exercises.

Things are going well on his recovery from constipation. Enough said.

We have moved out of our familiar oncology ward, downstairs to the smaller, quieter oncology ward. It's nice to know that we're no longer assigned to the room closest to the nurses' station where they could easily and carefully and very frequently monitor Jaxon in the early days of this admission.

Our Oncologist (Dr. Dix) stopped by to chat about what we can expect in the coming weeks as we move into the phase of treatment called "Consolidation". Thankfully, it's a much less intense one-month phase of his treatment. This Thursday, Jax will receive another IV dose of Vincristine (VCR) and also another intrathecal methotrexate (IT-MTX ... chemo injected into his spinal fluid). He'll get some sleepy milk for that one. If all goes well with those, we expect to be discharged on Friday. Dr. Dix wants us to stay in close proximity to BCCH until we can see him again in the clinic on Tuesday. And THEN ... we hope to hear him say that we are cleared to return to the Island for the rest of his treatment. He'll receive daily oral chemo at home, and will have 2 more weekly IT-MTX (to be done in Victoria).

Paul is planning to head home for the weekend as it's a big annual work weekend at camp that he doesn't want to miss, as long as he's not needed here. My mom will come here to spend the last few Vancouver days with me and Jax.

Admitted: May 8

From the very beginning of our treatment here at BCCH, we have been looking forward to this day, "Day 29" of his treatment plan. The real 29th day of his treatment will be this Saturday, May 10th. The clinic is not open for procedures that day, nor will it be open tomorrow because the clinic will be closed for a department-wide conference/training/development day. So today, Day 27, he received his "End of Induction" procedures - a lumbar puncture (LP) to extract spinal fluid to check it for bad cells, and a bone marrow biopsy, to ensure that the first phase of chemo was successful to bring him to remission.

He has had 3 LPs in the past 4 weeks. The first one was on the very first day we arrived at BCCH. It was done to check his cerebral spinal fluid (CSF) for cancer cells, and to inject chemo (intrathecal cytarabine, IT-ARAC) directly into the spinal chord as a precaution, in case the cancer was present there. He had another of these procedures done on Day 8, this time receiving intrathecal methotrexate (IT-MTX). Both times, there have been no signs of cancer in his CSF. It is expected that this test will continue to show negative results. Today he received his second dose of IT-MTX.

As today is not officially the 29th day, he will need to have 3 more doses (morning and bedtime on Friday, and morning on Saturday) of DEX, a powerful cancer fighting steroid . DEX really does a number on kids emotionally and physically.

7:54 am
Clinic procedure appointment at 8:00 am, as planned!

8:42 am
His procedure just started, will be done in about 15 minutes. Some results will be available throughout the day, others by end of tomorrow.

8:46 am (Paul)
When we arrived here at BCCH exactly four weeks ago, we started off in Room 5 in the Oncology Clinic/Intake Ward. On this (hopefully) last day of "Induction" we are in the same room. Full circle. We sat in this room wondering what was wrong with him a month ago and today we're hoping to hear that the bad is gone!

The procedure went well. The first thing he said when he woke up was "NOW can I have some Rice Krispies?"

He's been having some issues with pooping since the onset of his dehydration. We were quite happy to hear that he pooped a bit during his procedure, as it showed that his "lazy gut" was awakening. He pooped lots today, though we are still waiting for more gas and stool to clear his system. Poor little bubs ... his itty bitty body has been through so much. 

April 17

Quiet day for us at BCCH. Jaxon's procedure* this morning went well. He's been feeling tired and woozy so has been resting a lot. He had three days of decreasing hgb so they transfused him and he went from 76 on Wed morning to 102 today! Tomorrow we will rest and visit with some special folks. IV chemo on Saturday. We expect to be discharged over the weekend and be back to see our oncologist in the clinic on Tuesday. He and I will be staying with my cousin here in Van for most of the remaining 3 weeks. Pray for his energy to bounce back tomorrow.

*Intrathecal Methotrexate
"Intrathecal" describes the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord. Medicine can be injected into the fluid or a sample of the fluid can be removed for testing. Chemotherapy given intrathecally can kill cancer cells throughout the brain and spinal cord. 

(Jaxon receives IT MTX 3 times in this initial induction phase of treatment as a preventative measure. His spinal fluid showed no signs of cancer at time of diagnosis.)