when cancer came.: Lighthouse

Showing posts with label Lighthouse. Show all posts

Thursday, May 8, 2014

Safe to shore ...

This song has been on repeat for us these past few days ...

Rend Collective - My Lighthouse *lyric video*

* official video! *

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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!*