when cancer came.: "when you trust in God"

Jax sang this little line from a Veggie Tales song when he woke up from a nap at Easter Seals House on Easter Sunday.

the lingo (with links)

...................

6MP - Mercaptopurine (daily oral chemo)

A.L.L. - (B-Cell) Acute Lymphoblastic Leukemia

ANC - Absolute Neutrophil Count. This represents his immunity, and the goal range is 0.75-1.50. (Ranges on link are in US measures.)

BCCH - BC Children's Hospital (British Columbia, Canada)

DEX - Dexamethasone (cancer-kicking steroid)

HGB - Hemoglobin

IT-MTX - Intrathecal Methotrexate (chemo injected into spine every

3 months, because ALL is like a super sneaky ninja)

LTM - Long-Term Maintenance (11 x

85-day cycles)

LP - Lumbar Puncture (sedated spinal tap to check spinal fluid for leukemic cells and to inject IT-MTX)

MTX - Methotrexate (chemo - ORAL once weekly, IT every 3 months)

ONC - Oncologist (Dr. Ewa, pronounced 'Eva'), Dr. Dix

PLTs - Platelets

RMH - Ronald McDonald House BC

V.A.D - Vascular Access Device (subcutaneous port)

We call it his 'button'.

Vic - Victoria, BC

(clinic at VGH)

Vincristine (VCR) - monthly IV chemo

Jaxon received 51 doses.

Long-Term Maintenance

Began Dec. 11, 2014 - this

85-day cycle repeated until completed in June 2017.

6MP: 75mg every night

MTX: 40mg Thursday nights

Vincristine: 1.5mg via IV once monthly

Pentamadine:

Inhaled antibiotic to protect against PCP Pneumonia (Once montly, switched from oral Septra in July '15)

DEX: Oral steroids: 3.25mg-am/3mg-pm for 5 days/month

LP/IT-MTX: Lumbar Puncture (spinal tap) to check his spinal fluid for cancer; 12mg chemo injected to protect spinal fluid from cancer cells hiding out there. (Sedated; once every 3 months.)

Bloodwork: Counts checked every month to make sure the dosages of his meds are balanced. Blood sample examined under micro- scope each month to check for physical changes to structure and composition of his cells.

May 2023 Update

June 2022 . . . . . . . we celebrated FIVE YEARS OFF TREATMENT - a really important milestone. That's when he became a "long-term survivor".
• Annual bloodwork & oncologist check-up June 2023 - June 2026
• Every-other-year cardiology check-up (ECG & Echo) June 2017 - June 2026
Then he'll be 18 and responsible for making his own medical decisions.
Below list is behind us now:
• August 21, 2017 - VAD (port) removal surgery
• June 11, 2017 . . . . . . . . . . . FINAL at-home chemo!
• May 24, 2017 - LTM Cycle 11/Day 57: *Final IV Chemo!*
• April 4, 2017 - LTM Cycle 11/Day 1: *Final LP!*

when cancer came.

Sunday, April 20, 2014

"when you trust in God"

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