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.

#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 🎗

He has not forgotten us

My Mama shared these words, or something similar, in the early days after Jaxon's diagnosis. They've been forefront on my mind today. 

This morning brought frightening news from a fellow pediatric leukemia family - a reminder that there is no "good cancer" for a child to have. Their news of a relapse could be the very same for us at any time.

This afternoon we learned tragic news from a family we know through our camp, homeschool, and church communities. They are walking through the dark valley of the sudden loss of an adult son and brother.

For several days this week I have been supporting and praying for a friend who has a very sick little boy ... and there are currently more questions than answers about what's going on in his body.

Tonight as I watch my babies sleep, 
I'm holding to the promise that our God is with us. 
He has not forgotten us. (link)

one - year - countdown!

Jax finished DEX for this month yesterday. This morning, moments after eating a huge bowl of Mr. Noodles, he came to tell me he was still hungry. 
I listed off some options, to which he replied 'no' for each. Then I suggested 
a grilled cheese sandwich. He paused ... "No. But you almost got me with that one Mom!" After another pause ... "Actually, you did get me with that one. Yes please!"

Perfectly timed with the start of our one-year countdown until the anticipated end of treatment date (June 11, 2017!), our boy was honoured by his baseball coach with this ...

He thoroughly enjoyed playing ball once again 

and is eager for next season to start!

I took this screenshot of my countdown on June 11. 

We have completed 2 years and 2 months of treatment/recovery 

from A.L L. Now less than 1 year remaining!

It's an odd feeling. Many oncology parents agree that the official end of treatment is a time of very mixed emotions. For many, the end of treatment marks the start of increased anxiety, worry, and fear. As long as Jax is receiving chemo, we have a significant level of assurance that the Leukemia will stay in remission. Once we stop the oral, IV and spinal chemo regime ... The "safety net" is gone. It's the end of treatment but the beginning of questions like "Did he get enough?", "Did it work?", "Will it come back?".  At this point I don't tend to dwell on those thoughts. They are questions with no answers. Like my Mom said when Jax was first diagnosed ... It is in situations where I understand the least that when the sovereignty of God matters the most. We trust that He will carry us safe to shore - however that may play out. 

Even at his monthly IV chemo appointment last week, in the words of a fellow oncology mom ... "Leukemia didn't bother us much!" We are so very grateful that the most intense parts of his treatment are over, and that he is responding well to treatment. We have daily reminders that this is not always the case. 

Here is our beloved Anne doing her thing. 

These two bros got plenty of screen time to pass the hours while we waited for bloodwork to be processed, meds to arrive, meds to be checked, meds to be administered and monitored. 

Anne was the designated chemo giver that day since these two ladies ...

... are not allowed! 

This was the last day we'd see both of them before their maternity leaves begin. Steph, on the right, was working her last shift. Sarah hopes to work a few more weeks before her baby comes but we'll be in Vancouver for our next chemo appointment so we won't see her. 

So much love for these ladies for their roles in our small but mighty pediatric oncology clinic in Victoria. ⭐️💕🎗

July 19 will mark DAY 1 (of 85) of CYCLE 8 (of 11) of Long-Term Maintenance. We travel to BCCH twice a year to check in with our top docs. That was supposed to happen in June but we extended it by a month to coincide with our summer holiday plans. More on that in another post.