hello?

Hi.

I thought I couldn't access my blog anymore for some reason,
but it seems that I can!

All is well 2.5 years after completing treatment.

Dr. Ewa told me on Tuesday that it's probably time for me to stop keeping track of Jaxon's bloodwork results. They've been normal and "in the black" with no caution flags for ... a long time.

We'll see. I do like to track his height and weight. He's perfectly within the 50th percentile for his age group and thriving at school and his new passion - hockey!

I'm hoping to finish up a few posts that have been sitting in my "drafts" folder for a long time, especially as there is some exciting news to share as a result of the study Jaxon was on for his treatment ... and some other progressive steps in the treatment of his diagnosis - Standard Risk Pre-B Cell Acute Lymphoblastic Leukemia.

Next quarterly appointments are March and June 2020.

Then he'll move to biannual visits in December 2020, June 2021, December 2021, June 2022.

Then annual from June 2023 until he's old enough to make his own medical decisions.

More to come.

While you wait, I encourage you to find somewhere to donate blood!

www.blood.ca

Please leave a comment so I know you're reading. :)

Day 720

I forgot to add his ANC in the top right screenshot - it was 2.5.

Day 720 of Jaxon's recovery from Acute Lymphoblastic Leukemia. Almost 2 years into this ordeal, I'm still surprised to learn that some people think he's all done and finished his treatments. Not so! He continues with a cocktail of daily, weekly, monthly and every-three-months chemo administrations (oral, IV, spinal) as well as steroids for 5 days each month (plus several days of steroid hang-over). Every month his blood counts are checked to make sure the ALL remains in remission, and to make sure he is receiving the right dosages of chemo. This month his white blood count is a bit higher than preferred, but we suspect that is because he has some symptoms of a viral illness. If he has no cold symptoms and high counts again next month, his chemo dose will likely increase. If all continues to go according to plan, the anticipated end of treatment is mid-June 2017.

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.

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. 

Standard course of treatment

At this stage in Jaxon's treatment, all indications are that he will follow this protocol, understanding that there may be delays or complications that could arise over the 3 year period.

About treatment, from the Children's Oncology Group website: 

(no longer available online - I'll have to find a new link. RZ 20-Apr-2025)

ALL is a cancer of the blood, so treatment is systemic, meaning it affects the entire body. At the time of diagnosis, the healthcare team will insert a central line to provide treatment.

Chemotherapy is the mainstay of treatment.

• Induction:
 The first phase of treatment usually lasts four weeks. Children receive three or four drugs by mouth, intravenously (into a vein), or into the spinal fluid (intrathecal delivery). The combination of drugs depends upon the leukemia factors as above. The goal of this phase is to kill the leukemia cells and allow normal blood cells to return.

A bone marrow aspirate is performed at the end of this phase. The bone marrow is examined under a microscope, and is expected to show only normal cells. This is called remission. This does not mean that the child is cured, because without further treatment the disease will return. However, it is a very important first step on the road towards being cured. Nearly 98 of every 100 children with ALL enter remission at the end of the first month of treatment. Other tests (such as minimal residual disease) may be performed on the bone marrow and may be more sensitive at finding leukemia cells than looking under a microscope.

• Consolidation:
 The second phase of treatment lasts from 12-16 weeks. Different drugs from those used during Induction are given by mouth and intravenously.

The purpose of the consolidation phase is to kill leukemia cells that may remain after the drugs used in induction. Another main focus is on treating and preventing the growth of leukemia cells within the central nervous system (CNS prophylaxis). To accomplish this, spinal taps with intrathecal chemotherapy (directly into the spinal fluid) are performed weekly. For certain types of leukemia, or if leukemia cells were present in the spinal fluid at the time of diagnosis, radiation therapy may be given to the brain and the spinal column during this phase. In most cases, part of the Consolidation phase will include treatment with the chemotherapy drug methotrexate. Methotrexate is given intravenously, either at lower doses in the clinic or at higher doses that require a 2-3 day stay in the hospital.

• Delayed intensification:
 This 8-week phase of treatment includes medicines similar to those given in Induction and Consolidation. This has been shown to be helpful in preventing leukemia from returning. The exact timing of the doses and the specific drugs used depend upon the individual characteristics of a particular child’s disease.

• Maintenance:
 The final phase of treatment lasts two or three years. Maintenance is much less intensive than the previous treatment and consists mostly of oral medications given at home. There are also intermittent intravenous and intrathecal medications given throughout this phase.