Survivor: /noun/ a person remaining alive after an event in which others have died
Yes and amen. It’s true. Chase is and has always been a survivor in one capacity or another, and now it’s official: research data and his medical teams officially call him a survivor too. But this is not the end of a story. It’s more like another stop on a long and winding journey – the very word Chase’s Dr. Lulla uses to describe what’s still ahead of us.
I used to say that the treatments might kill him, but the cancer surely would and I haven’t used that sentence in a long time. However, at this point, there is a bit of a sinking realization that those words still hold true. Here’s why and here’s where Chase is today – as shown through a list of all the lab-coated friends he has and the standard appointments he will keep all year, every year. THIS is survival*:
- He has an eye team to monitor the radiation-induced cataracts, vision loss, and overall sight deterioration.
- He has a social worker, neuropsychologist and behavior specialty team to help deal with brain damage-induced emotional issues.
- He just garnered a urologist to monitor his development in conjunction with his endocrine system.
- He has a yearly ECHO to monitor the chambers and strength of his heart.
- He has quarterly hearing tests to monitor deterioration of high and low frequencies both.
- He has an otolaryngologist (hearing/ENT) to monitor his ears and the losses therein.
- He has a neurology team to monitor potential seizure activity and medication doses as well as emergency plans for his school staff, bus drivers, etc.
- He has a neurosurgery team who continue to monitor his progress post-resection and advise on when to biopsy or remove the current growths.
- He has an endocrine team monitoring his body and how it no longer wants to grow on it’s own (there is a lot coming up with this team, so stay tuned).
- And despite the move to STAR clinic, he will still have a fully loaded neuro-oncology team who specialize in quality of life, recurrence, and secondary concerns.
- He is followed and helped in school by extra aids, speech, occupational, and even physical therapists.
- And then there are always the labs monitoring everything from his growth hormone abilities to his white blood cell counts.
- Not to mention the near every doctor examinations of skin breakdown, scar damage, teeth, eyes, belly, neurological reflexes, and speech patterns.
Chase gets his yearly ECHO with his tech friend, Anthony
This being written and said…don’t let the laundry list get you down! Chase is a survivor and a thriver and some of the greatest minds and hearts of the human race and been forged in unrelentingly unique and pain-filled circumstances. And in fact, he’s one of the few among his cancer friends who doesn’t already have hearing aids, doesn’t need a walking aid or splinting assistance, and doesn’t require specialized therapies necessitating nearly weekly hospital appointments. Compared to many of his cancer friends, this is the shortest list and the easiest end of the proverbial stick.
Why publicize the laundry of survival? I guess the heart of this is to entreat you to hug a survivor – many of whom continue in a purgatory of treatments and treatment decisions. It’s to urge you to support research. It’s to turn words into the awareness that for many, the complicated cancer journey never really ends until the life ends. (And then starts a totally different, complicated journey)
Deep in my heart, this list is why I hate the MRI wait. It’s not so much the wait for the news of one scan (though, I do wait with baited breath all the same), it’s the wait for The Day (talked about in the book of Revelation) that gets to me. Even when the scan results are stable, Chase’s body is still broken. I’ve asked myself a million and one times why I still chafe when stability is exactly what we hope for, and I think this is why: our souls were not made for this brokenness. Even when it’s the best human outcome in all the crazy-awful, our souls cry out for the end of the hard journey; the days with no pain and no tears, the days where it will no longer take a village…scratch that…a giant urban city to care for my Chase boy.
But it isn’t that time yet. So we gather the pieces of our brokenness around us on the journey, clutch our list of specialty teams like the good friends and badges of honor that they are, pray for wisdom to pursue God’s glory in Chase’s quality of life, and cling to the hope that there is great beauty in this atypical life. For this is truly how we survive.
Moment by moment.
*Bob and I have been aware of every single one of these damages and side effects from the very beginning of this journey as we prayerfully made decisions and made our peace. There is no blame in these words or desire to shift our responsibility – just plain truth: the current conditions of pediatric brain cancer care are such that it is a life-long diagnosis whether the cancer recurs or not. The implication of ‘survival’ is that the patient lives three to five years from the date of discovery.
