too many kids with cancer

Since my boy was diagnosed with Leukemia in 2014, close to 1000 other kids in BC have received a cancer diagnosis. As of today I personally know 4 families from “before cancer” who have received the news of a cancer diagnosis for their child. It has to stop! Until a way to stop it has been found, we have to keep striving for safer, more effective ways to minimize the long term effects and deaths. Many kids who do not survive their diagnosis are lost to complications of the “treatment”, not the cancer itself.

That’s why I will not stop raising my voice.

5 Years Out

Sarah, Charity, Krista, Anne <3
They've been part of our team since Month 2 (May 2014).

5-years off treatment check-up in Vic today. Postponed from June because the Dr. was sick. Sure is nice to delay an oncology appointment by 3 months with no worries. The ladies spent a long time marvelling at how tall and grown up he is. We are Ever. So. Grateful. Even JUST ONE kid with cancer is TOO MANY kids with cancer.

June 11th was officially 5 years off-chemo!

I can think of no better way to celebrate F. I. V. E. years off chemo than the day we had today. We had a surprise visit from friends who we met along the way - knowing their boy is no longer with them earthside makes our gratitude ever so much deeper. W fam - we love you and we miss your boy and we think of him often. JZ spent the day with his ball team and their families - pool party, wiffle ball game, man-tracker game, and just sharing space together. We are ever so grateful to have reached this really significant milestone in the life of a childhood cancer patient that is officially called “long-term, event free survival” or something like that.

we are aware.

"Make September Gold" for Childhood Cancer Awareness Month

We are aware. And we are thankful that since the time of Jaxon's diagnosis in 2014, some advancements have been made in the treatment for Acute Lymphoblastic Leukemia. The protocol still includes medications developed for adults well over half a century ago, and it's still brutal, but it's a little bit less so. If he had been diagnosed in the past year or so at the same risk level (standard risk, not 'low' or 'high' or 'very high') he would have had slightly less chemo (the one he got via IV every month is now given every 3 months) and less frequent steroid pulses (also given quarterly now rather than monthly). It's still horrendous.

Jerry the Moose and Miracle Treats

Me and JZ and Jerry the Moose did our part on DQ’s #miracletreatday for #bcchf in #clearwaterbc

We had a lengthy, unplanned visit to my humble little hometown.

I was at my Mom & Dad's recovering from my first (and hopefully last) experience with vertigo (post-Covid).

JZ joined me in Grandma's Convalescence Home after contracting a bothersome childhood virus at summer camp. Grandpa drove to West Kelowna to fetch him.

We ate a lot of popsicles, and got to celebrate our last evening with a treat that helped support sick kids and their families in British Columbia.

thirty eight.

When Jaxon finished treatment for Acute Lymphoblastic Leukemia on June 11, 2017 - he had been on chemo for 38 months (3.17 years, 165.47 weeks, 1158 days). 

As of 6:00 this evening, he has been off chemo (and the wretched steroids) for as long as he was on! This feels like a really big deal. 

He's been off treatment for just over 3 years.

His most recent check-up in June happened virtually due to Covid-19, and his blood counts were perfectly within normal range. That was the last of his quarterly check-ups. Next one is in December. He'll have check-ups every six months until June 2022, which will take us to 5 years off treatment which is a REALLY big deal in the childhood cancer experience. From there he'll have check-ups once a year until he's old enough to make his own medical decisions. 

We are grateful.

Covid-19

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. :)

Mercaptopurine (6-MP)

Mercaptopurine (click for more info) is one of the cornerstones of treatment for Acute Lymphoblastic Leukemia in children. Jaxon started taking it during the 28 days of Consolidation, the second month of frontline treatment (May 15 - June 11/14), then not again until he began long-term maintenance in December 2014. He took it nearly every day for the next 900 or so, only skipping about 12 doses due to low counts. 

For the majority of his treatment, he was required to take 6-MP on an empty stomach. It was generally believed by most of the VIPs of childhood cancer treatment that food, especially dairy and citrus, interfered with the absorption of 6-MP, thus jeopardizing its efficacy. This was manageable during Consolidation as I would just wake him up at around midnight, give the meds, and back to sleep he went. 

During LTM, when he had 5 days of steroids and about 5 days of steroids-hangover, it became much more difficult. With unstable emotions, difficulty making decisions, trouble falling asleep, ever-changing food cravings and aversions ... it was really hard to maintain a dose of meds given on an empty stomach. It was a big ask to send the boy to bed hungry when he had spent the whole day not sure of what he wanted to eat and then he FINALLY made a decision. Saying no because it was almost medicine time was just not going to fly. He was supposed to take the 6-MP at as close the same time of day as possible. All that to say, I spent 2.5 years rousing him from his sleep 2 hours after his last bite to eat, just enough to give the meds, and making sure he swallowed fully before laying back down to sleep. I think we might have switched between giving it in the morning and the evening, but for the most part it was done around midnight. That was also encouraged because of the nausea that often came along with the dose. Sleeping it off was better than toughing through it in the morning.

As with the Dex, we started with liquid 6-MP. We only did that for the first round of it in Consolidation. Again, the volume of it plus something to mask it (we used a touch of chocolate syrup during Consolidation) was just too much. We learned that the tablets were easily dissolved in just a tiny bit of warm water, so we changed tactic once he started LTM.

Medicine box during Consolidation.

This photo and all the ones below were taken during the last week of oral chemo!
On Thursdays he also took a dose of oral methotrexate, except for the 1st week
of every 85-day cycle when he received MTX into his spine via an LP.

I was supposed to wear gloves and a mask even just to open the bottle of 6-MP. I did not comply. Parents of kids on chemo who wear diapers are supposed to wear gloves to change them. :( I got very good at pouring the pills from the bottle to the daily box, then from the box into a 5ml syringe. I would pull about 3ml warm water from a tiny glass that I used only for that purpose. I'd cap the syringe and shake it until the pills dissolved. Carefully remove the cap so it didn't splash, remove all the air, pull a tiny bit of Mio water flavouring (orange only! to mask the taste), replace cap and shake again. If you've ever seen one of those little water flavouring bottles you can probably imagine why it worked so well. All without touching any! I could even get them split in half (he took 1.5 pills for a long time) without touching anything. The pill splitter and box went to the biohazard garbage at the hospital when we were done with them.

Label removed, clearly marked with warnings, and kept tucked away in the medicine box.

We called it "drinky medicine".
(Never to be confused with "sleepy medicine"!)
I would carefully remove the cap and he'd suck it up.
By the end of treatment, he was a total pro.
But still, to this day, he will not swallow a pill.
Lots of kids, even really little ones, can swallow their pills with no problem.

Just a few months before his end of treatment date, the powers that be decided that there was no clear advantage to taking 6-MP on an empty stomach. "The Moms" (our oncologist worked really hard not to roll her eyes when I mentioned "The Moms" from an online support group I'm a part of) had been talking and swapping stories for months about how some hospitals lifted the food restrictions around 6-MP while others had not. Every month I'd ask her if she'd heard anything official, and every month it was ... "not yet".  It was such a relief when we finally got the go-ahead to take the 6-MP with food. What a difference it would have made for the previous 800+ doses. We're so glad that new patients don't have to experience that part of it.

This was the penultimate dose.
There was always a bit of residual medicine in the syringe so we always
pulled two extra syringes worth of the warm water in to get it all out.
Syringes went into a biohazard box that we returned to clinic when it was full.
I felt awful with the amount of syringes we went through, but it was just what worked for us. 

Sunday June 11, 2017 was a great day for dinner at friends-who-are-family's house.
They got to celebrate his last dose of chemo with us. It was pretty exciting.
He swigged it back and rode off into the sunset on a borrowed bike, and no helmet.

These friends ... there with us through it all! 

That's our story about mercaptopurine.

hello. all is well.

Hi friends.

I'm working on getting this old blog updated with more of the details from treatment and our life since then. I'll be backdating some posts, so they won't show at the top.

Nearly 2 years off of active treatment, Jaxon is 10 years old and thriving. He completed his first full season of minor hockey in March and began his 6th season of minor baseball on April 1.

April 10 was the 5th anniversary of his diagnosis.

It was also the first game of ball season - a home opener!

Five years today was our family’s darkest day when we learned of Jaxon’s leukemia diagnosis. We didn’t know what the next hours or days would look like but here we are now. Ever and always grateful. Rejoicing with other survivors, remembering the ones who are still walking through the deep waters of treatment and uncertainty, and honouring the ones who are no longer with us. ♥️ Even JUST ONE kid with cancer is TOO MANY KIDS WITH CANCER!

Today, after spending 4 hours playing lots of road hockey and a little bit of video games with his friends he asked me "what are we doing today?".

Life is good.

Jax accumulated a LOT of Lego over his 3 years in treatment, and continued to collect after as well. In January he decided to reduce his collection. Some favourites were kept, some given to brother Marty, some sent to the consignment store, and several smaller sets donated to the peds oncology clinic at VGH for kids to build on long days, or just to take home.

Jax and Tucker sorting Lego - January 2019
{Tucker is 11, one year and one month older than his littlest boy.}

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.