Empowering people to find their mojo during a crisis.
Thrive Global Magazine
Surrender — I know, that sounds like the strangest thing EVER. So let me break this down. We can’t control the outcome with cancer and yet, in the beginning we try so hard to control everything, spinning and spiraling with anxiety, thinking, “If we do the right thing, she’ll make it.” When we surrender, we accept the facts of the diagnosis and length of treatment, and stop ‘what if-ing.’ Then, space opens up in our minds and souls. Now that we are no longer frantic and filled with anxiety as we try to fix our kid, we can focus on creating our new normal. Let me share how.
Cecilia at a Courageous Kids event during treatment
Cecilia with her little sister Madi. With Ceal’s help, we created a weekly routine for her labs that was fun and took the fear of pokes away.
Our family then! Finding ways to surrender and cope with the new normal...
Cecilia and her best friend Teagan having a hospital party!
The Hospital Party
Elephants and Tea Magazine
Being in-patient, scheduled or otherwise, can really suck. It sucks for the patient, the caregivers, and is especially brutal during those extended hospital stays. When our 3-year-old was diagnosed with childhood leukemia, we were told that during the first month she’d likely be inpatient - a lot - depending on how she handled the volumes of chemo pumped into her little body. Then, later in treatment, there would be six scheduled hospital stays, lasting anywhere from three days to a week, again depending how she metabolized the chemo. Oh, and that’s just the schedule for when she’s healthy - add more hospital stays like this for fever, super low ANC, or chicken pox (us). As you well know, these kinds of hospital stays are pretty standard cancer-fare.
But I don't care who you are - caregiver or adult, teen or child patient, these visits make for a long time to be stuck in a little white room pondering your (or your loved ones) existence. If you’re ‘lucky’ it’s not covid times and you are well enough to do laps around the ward, or visit the playroom, take a walk outside. And if not? Yipes. You’re STUCK. And at the beginning of our journey, that kinda freaked us out, so we decided to shake things up.
Cecilia with her IV and her magic cancer-fighting dinos
Establish Your New Normal
Elephants and Tea Magazine
Creating Routines and Boundaries
Cancer sucks for lots of reasons, not the least of which is the length of treatment – it sometimes just feels endless. With cancer, it’s not like you can simply get a scary diagnosis, process those feelings, kick cancer’s butt and move on quickly. There’s the long diagnosis and staging process, then treatment, sometimes surgery and radiation. And even when treatment is done, there remain long months or years of checking to make sure the cancer stays away. This is especially true if you are a kid fighting the battle as typical childhood cancer protocols are long ordeals with lengthy treatments, extended follow-up and years of after-care.
I know. Our daughter Cecilia was dx with ALL at age 3, which involved a two and a half year marathon of treatment and years of follow-up. Now 26, conversations about treatment still occur with regular doctors as they learn her history. That’s a damn long time. Following her treatment, my Dad was hit with esophageal cancer and I, along with my Mom, became primary caregivers. Both of these experiences have given me some major perspective on the importance of creating some sense of normalcy amidst the crazy, long journey of cancer treatment.
Don't Be A Hero,
You Already Are
Elephants and Tea Magazine
Your child was just diagnosed with cancer and my heart goes out to you. Diagnosis day is a day forever imprinted in your soul - “D-Day” in our house: January 6th, 1999. I’ll never forget that wash of shock, fear, and utter paralysis when our daughter’s Oncologist called us at home with the news: Cecilia had leukemia.
As much as you want to crawl back under the blankets after getting that call, life in the childhood cancer world very quickly demands that you wake up, pay very close attention, and get organized as you immediately become the primary advocate and gatekeeper for your child’s treatment years and follow-up care. This includes everything related to your child's diagnosis -- from her treatment to the emotional impact to the sudden changes in her life....and yours. And nobody really tells you that this is what you’ve signed up for, at least not in the medical community - they are busy saving your child’s life, after all. After those first few days in the hospital for diagnosis, we were clearly expected to quickly get our shit together - what choice do you have as a parent of a kid with cancer? We felt the overwhelming need for help and had no clue how to ask for it or exactly what we needed help doing - besides everything.
Cancer is always a beastly diagnosis and often a lengthy treatment, all for the hopeful goal of an eventual cure. It isn’t typically something that’s a quick fix, a one-and-done, although we often wish that it were so. There are months or years of treatment, and an even longer follow up schedule as you are checked and retested to make sure the cancer is still gone. And for many of us, patients and caregivers alike, when we fully understand the length of treatment, that’s when it starts to be overwhelming – that “holy crap how am I going to get to the finish line?” feeling. We long for the easy diagnosis, the fast cure so we can move on and get back to our lives. But that’s not life in the cancer world, is it? While it’s tempting, fighting and mourning for your old life is futile as that will never exist again. Carving out your daily path, finding any sense of normalcy and joy in the life you have right now, depends on inventing your new normal.
When our three and a half year old little girl was diagnosed with ALL we had all of those feelings. Overwhelm. Denial. Despair at the three years of treatment and five years of follow up ahead of us. It just seemed… impossible. Would we make it, literally, and emotionally? Would her little body be able to handle all those drugs? Where would we find the stamina and the ability to rally our family for this long haul? And most of all, would it cure her? I spiraled for a while (a long while) in my puddle of anxiety and fear for my child. And then I looked at my little family and realized something needed to change. For me, it started to click when I accepted our circumstances and surrendered to the situation at hand. She had cancer. It was 3 years of daily treatment. Prognosis, while good, was no guarantee.
Rising Through Resilience
Laura DeKraker Lang-Ree On The Five Things You Can Do To Become More Resilient During Turbulent Times
An Interview With Savio P. Clemente
Courage is often likened to resilience. In your opinion how is courage both similar and different to resilience?
Courage is a choice to surrender to and face the situation at hand. And you have to have the courage to move into resilience — into whatever the situation is in your life. Resilience is the ability to maintain that courage against set backs and challenges. That’s how courage and resilience differ.
Courage and resilience similar in that they are both a choice, an intention you have to set in life for them to manifest. And it isn’t always easy. Sometimes it can feel oddly comfortable to live in your suffering. It becomes familiar, a cloud of Eeyore-like behavior that we get used to, and the thought of moving off of that couch of despair can seem harder than dealing with the despair itself.
But the more courage you choose, the more your resilience grows because you know you can persevere and come through stronger.