the "button"

Jaxon received his VAD (Ventricular Access Device) in the early days after diagnosis. I'd have to look back on my notes to see exactly which day. It's probably on this blog somewhere. Many young kids are taught to refer to it as their "button". More formally referred to as a port.

This is an x-ray of JZ's chest with VAD.
I don't remember how I acquired this image.

The Button was removed in August 2017. I asked the surgeon if it was possible for us to receive it as a keepsake. He said that was most likely not possible. 

Pre-op Tylenol

The very last "access" of his VAD.

The aptly named "Tele-Tubby" bandage to protect the port while accessed.

Passing time, awaiting surgery.

He was the happiest, goofiest patient - almost always.
Only when he felt really poorly did he complain.
This was a very happy day.

The Button!
Somehow it got sanitized and placed in a specimen cup
and dropped out of a hole in the surgeon's pocket into my waiting hand. :)
It still sits on JZ's bedside shelf, beside his pictures of friend Lucas. xo

Delicious recovery treat.

Update: 4-10-2024

The Button that somehow got sanitized and placed in a specimen cup and dropped out of a hole in the surgeon's pocket into my waiting hand no longer sits on the bedside shelf of 15 year-old JZ. It's tucked away somewhere safe. The scars on his chest and neck remain.

And we still miss Lucas.

#kidsgetcancertoo

Kids get cancer too. We honour them with the colour GOLD - especially in September, when we raise our voices even more to increase awareness (IT'S NOT RARE) and to raise money for meaningful research that will lead to safer treatments, fewer relapses, and more long-term survivorship. ("Long term" is actually only 5 years when we talk about childhood survivors of cancer.) Even JUST ONE kid with cancer is TOO MANY KIDS WITH CANCER! AWARENESS + ACTION = FUNDING ... which just might lead to a cure. 🎗

counting down

APRIL 4, 2017

May 24, 2017

MAY 29, 2017

JUNE 5, 2017

last DEX dose

WE'RE SO HAPPY TO BE DONE WITH DEX!

May 29, 2017 @ 9:55am

For the first few months, Jaxon's dexamethasone was given as an oral liquid. Later on we switched to pills because the volume of the liquid he had to take in (med plus flavour to mask the taste) became unbearable for him (and me - the one making him do it). The pills were really tiny and he said they didn't taste like much of anything. As he wasn't able to swallow pills, we had to get creative. We started cutting a slit in jelly beans and giving them that way (with a chaser bean), but eventually switched to Swedish Berries. They were a much softer vessel, (straight, no chaser). Pic below shows how I would prepare the 5 days of double doses. 



First dose was always taken the evening of his clinic appointment, 2 daily doses for 4 days, then final dose the morning of Day 6. 

Dosage for Dex varied through the first few months of treatment according to protocol, and increased gradually through long-term maintenance according to his BSA (body surface area).

3mg/m2 daily for the first 4 weeks. (April 12 - May 7, 2014) 
(Don't recall the actual dose he had.)

7.5mg total daily (in 2 doses) August 8-14/14
7.75mg total daily (in 2) August 25-31/14

5mg total daily x 5 days monthly Dec/14-Aug/15
5.25mg total daily x 5 days monthly Sep-Oct/15
5.5mg total daily x 5 days monthly Nov/15-Apr/16
5.75mg total daily x 5 days monthly May-Jul/16
6mg total daily x 5 days monthly Aug/16-Jan/17
6.25mg total daily x 5 days monthly Feb-Apr/17
6.5mg total daily x 5 days monthly May-June 2017
and no more!

I've posted before about how troublesome steroids are for kids in treatment. No joke. The stuff is horrid.

walking on [frozen] water

We are in the anticipated final months of this kid's treatment for Acute Lymphoblastic Leukemia. We'll never be the same after how our lives changed on April 10, 2014. We are grateful for how well he has responded to treatment and it is our fervent prayer that will continue. 1 more sedated lumbar puncture with spinal chemo injection, 4 more monthly IV chemo infusions, 4 more (5-day) rounds of themuch-loathed oral steroids, and daily at-home oral chemo until June 11. We are so close! He will be followed closely by the incredible paediatric Oncology team in Victoria for one full year after "end of treatment", easing off to every three months for another two years, then every six months for a while until finally once a year, for the rest of his childhood. He'll then be followed by his adult physician ... wherever his path in life shall take him. So "the end" is never really truly "the end", but we are so very much looking forward to living a simpler life with our thriving boy. My heart aches to write these words as I know far too many families who did not experience a happy ending. 

🎗 #childhoodcancer 🎗 #kidsgetcancertoo 🎗 #notrare 🎗