4-10-2024

4-10-2014 ... Ten years today, since Cancer came to our family.

Every year I have different thoughts and feelings and musings about our experience. Overwhelmingly, I feel grateful.

Grateful that he got "the good one" (no such thing, but we are mindful that the prognosis for Pre-B ALL is generally optimistic). Grateful that he was considered "standard risk" (could easily have been "high risk" if things didn't go according to plan in the first few weeks of treatment). Grateful that he responded exceedingly well to treatment (not all kids who get a "standard risk diagnosis" of "the good one" respond well to treatment - some of them do not survive). Grateful that so far we have seen no physical long-term effects of the chemotherapies and steroids that his body was pumped with for 1,158 days between the ages of 5-8 - a critical time for growth and development (many friends face significant physical complications and pain - long after their treatment ends). Grateful that the psychological impact of the experience has been relatively mild (as far as we know - that could change). Grateful that our family is intact (many marriages, partnerships and family units do not survive the experience).

Grateful that our boy is here with us.

Grateful for the many days when we don't think about cancer at all.

Grateful that we get to watch him grow into a well-loved friend, leader in his community, passionate to stay active and healthy. He really doesn't enjoy the spotlight, so I'll sneak into here that he was recently honoured as the player on his hockey team with the Most Team Spirit and was a co-recipient of the Official (referee / linesman) of the Year award from our hockey association.

Gratitude is not the only thing I'm feeling as I look back on the past ten years. I am forever changed. My heart and eyes have been opened to the reality faced by parents of sick kids. Childhood cancer has absolutely been the most traumatic event of our family's life - but he's alive and he's well. I have learned the importance of holding space for those with kids affected by Batten Disease, Diabetes, disordered eating, behavioral disorders, and congenital heart defects. I understand a little bit more about grief, and feel a bit more deeply when I see people forced to mourn the loss of the life they thought they might experience. Babies with cancer and grandparents and young adults and moms and dads in their prime - gone too soon. Marriages and families rocked by mental illness, parents desperately struggling to find support for their kids with complex medical and psychological needs. Kids with cancer and kids without cancer and all the other humans living in war zones. Sometimes it just feels like too much.

Life is really hard. And it's really beautiful too.

May we all find a balance that fits - even just for a moment, a reprieve when we need it most, hope when we think there is none, moments of joy in the midst of sorrow, strength beyond strength, rest for the weary.

Every spring when I see the cherry blossoms and dandelions - I'm reminded that life can change in an instant (or a slow progression), I'm stronger than I think, my family is surrounded by love, my life is beautiful, even though it can be really, really hard.

That's what I'm thinking about on 4-10-2024.

Relentless

One of my greatest take-aways from our experience with childhood cancer is that more people need to become grief-literate. More people need to learn how to support people in their lives who are experiencing profound loss. More people need to learn what NOT to do or say when people in their lives are experiencing profound loss. I listened to this two-part podcast this week - two dads sharing and supporting one another in the aftermath of their sons' tragic deaths.

Relentless Podcast - 2 fathers discuss loss, grief & aftermath of heartbreaking tragedy - Part 1

Part 2. Chris Joseph & Kyle Dubé - 2 Fathers discuss loss, grief & aftermath of heartbreaking tragedy.

* You can watch the video / listen via the link or in your podcast app.

* Contains discussions of teen/young adult deaths by vehicle crash and suicide.

I tried really hard to format the links to look the same but there's a gremlin in the formatting.

Both are links to the podcast episode web pages.

he got himself a mullet.

The first few weeks of April have become a major point of reflection for me, since cancer came to our family 9 years ago. In some ways it feels like a lifetime, and sometimes the memories take me right back to those early, uncertain days. Like when I hear of a child we met at RMH passing away after numerous relapses, or a young adult (still her mama’s baby girl) being diagnosed. Or when I’m in a room of about 15 baseball volunteers from our valley and THREE of us are parents of a kid who has had cancer. Childhood cancer is not rare and it is relentless and we need to find safer and more effective treatment protocols so that more kids get to become “long-term survivors” like mine has. “Long term” is only 5 years past diagnosis date, which really isn’t that long at all. Always, ever, so very grateful that we get to watch him grow and live his life to the fullest. Every kid deserves to get a mullet haircut if they so choose. That, he did.

Tommy's Award

April 10. In 2014 he was flown to BC Children’s hospital to begin life saving treatment for Acute Lymphoblastic Leukemia. That lasted 3 years. One of his biggest asks for when he was finished treatment was to join his friends in minor hockey. It wasn’t long before we realized hockey would become a big thing in his life.

4-10-2022 was a really special day as we got to gather with our hockey family and community to celebrate the season for all the players. JZ was honoured with two awards - Most Dedicated from his coaches and the Tom Trottier Memorial Award for Most Sportsmanlike Defenseman (Association award).

With Steve Beck & Jenny Fawcett
Jenny is the Mom of an ALL Survivor,
so this was pretty special for her to present.

I learned a little bit about Tommy, as his sister calls him. What she told me makes this award extra special to me, as a Mom. “He died while peacekeeping in Cypress in 1988. He was a twin to Gerry (also served for Canada) and brother to 2 sisters. He was 21 when he died. My parents wanted to preserve his existence in this world by a reward to local minor hockey, something that we all grew up with here in Lake Cowichan. Tommy’s legacy is one of fairness, fun, humour, loyalty and love. We remember him with great love and at the same time humour, fun zest for life and unconditional love for family and friends. I would like to thank you for asking. It means so much. I’m proud that your child won this award. Time goes on, love never dies.”

Private Thomas Julien Trottier
Princess Patricia's Canadian Light Infantry
3rd Battalion - United Nations Forces In Cyprus
Died April 25, 1988

4-2-2023: My guy. Once again honoured by the grownups in his life, recognizing him for his character and quiet leadership on and off the ice.

Tom Trottier Memorial Award for Most Sportsmanlike Defenseman
Presented by LCDMHA President / Coach / Mentor - Steve Beck

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