DO YOU EVER WONDER HOW IT ALL STARTED…??
On Sunday, Chase’s marks ten years of cancer fighting. TEN YEARS is quite the journey, dear ones, isn’t it? In case you’ve joined us more recently, or in case you’re curious or it’s been a while… here’s what brought us to this place:
Just before dawn on Tuesday, July 31, 2012, a six-year-old Darcy woke us to complain that Chase – only two and still in his crib – was “moving around and won’t stop”.
“El…! You need to come here! Chase is having a seizure!” The mix of deadly calm and worry in Bob’s words propelled me from the bed before my eyes were fully open, heart racing.
And just like that, we woke to the first day of a completely different life, never to return to the one we had known ’til then.
Within hours, we would learn that there was “a large mass” shoving one half of his brain into the other (causing the seizure) and that the hospital we had been taken to by the ambulance wasn’t equipped to deal with cases on this level.
By noon, Chase had been transferred downtown to the brand new Ann & Robert H. Lurie Children’s Hospital of Chicago facility.
Within hours of the transfer, we had learned that he was having near constant invisible seizures and he was moved to the intensive care unit.
By early Thursday morning, 48 hours later, we had signed papers, said goodbye, and handed our little boy to a team of neurosurgeons.
The surgery was mercifully short as brain surgeries go (under four hours), but the news was a worst case scenario: While the initial tumor had been successfully removed, Chase’s lead neurosurgeon gently explained that the pathology was not only deeply malignant, but also highly aggressive, and that he had actually visualized cancer cells all over the top of his brain…too numerous to be removed. The scans backed up the doctor’s assessment. There was cancer all over the brain, in the spinal fluid, and lining the spinal column.
The plans were placed, the words were guarded, and nobody expected Chase to survive his third birthday.
But he would…
The next nearly two years brought seemingly endless complications, procedures, and days spent living in the hospital. We moved in with my parents, who cared for our other three children. Chase went through so much chemo, so many days of radiation, and bag after bag of transfusions – so many interventions that Bob and I l have since lost count.
He finished treatment sixteen months to the day after starting and immediately began extensive therapies to improve his quality of life.
He could speak, but he didn’t understand what words meant.
He wasn’t growing.
He couldn’t hear well.
He couldn’t see well.
He had almost no short term memory.
And we were informed that these would most likely be just the beginning of side effects.
There were routine scans every few months.
A year later, the MRI picked up a small growth and we battled relapse fear – another MRI after six of the longest weeks of our lives showing what was most likely a radiation damage and he was diagnosed with benign tumors/cavernous malformations.
The next summer, he was officially diagnosed with significant hearing loss.
The following spring, he had two separate surgeries to remove cataracts and try to improve his vision.
Three weeks after the first cataract surgery occurred in 2016, Tyndale House Publishers published my labor of love – “Chase Away Cancer” – the story of those first six years and some of the lessons we’d learned along the way.
We settled into post cancer complications and life.
A little over two years later (after the longest season of only routine appointments and few emergencies) an MRI pick up strange thyroid growths and in the last week of January, 2019, Chase was diagnosed with thyroid cancer and had his entire thyroid removed.
A few months later, Chase had his first visible seizure in seven years.
Only weeks later, his thyroid site showed cancer in a couple of surrounding lymph nodes and despite a full body scan showing the spread to be contained to the thyroid area, Chase was scheduled for radioactive iodine therapy two weeks before Thanksgiving.
Since that time, despite frequent health anomalies that seem to require lots of appointments, tests, and even occasional surgeries and procedures, Chase continues with his two-cancer diagnosis – the primary never having relapsed, the secondary having been stopped from spreading.
We have no idea what comes next. Although we will be meeting with a genetic specialist in September to try and better understand why Chase’s body succumbs to proliferating cells the way it does and if we can possibly protect him from ever having another diagnosis.
His story has been shared from teary hospital rooms to history-packed halls of the White House. And if we’ve learned one thing in ten years, it’s that Chase is a precious law unto himself, a broken, beautiful story that only God himself knows completely.
As always, thank you for coming on this journey with us.
Moment by moment.
[Chase’s family includes Dad (Bob), Mom (Ellie – who is the primary writer on CAC), older sister Darcy (16), older brother Aidan (13), and younger brother Karsten (10)]