cancer – Page 9 – CHASE AWAY CANCER

The Horizon

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.

Chase with nurse Jessica in recovery (complete with red popsicle stains)

Breaking Down The MRI Results – VIDEO

We’ve now heard from all of Chase’s teams.

Here’s a little update with a breakdown of what happened with the MRI and what comes next.

And because I love you, I recorded a video instead of writing a blog. But don’t worry, I won’t leave my day job. xo

#MomentByMoment #ChaseAwayCancer

Why Your Violence Offends Me

Dear Sons and Daughters with the Guns and the Hate,

Stop.

Please stop, I beg you.

I may never understand what it’s like to be you and it breaks my heart that I can’t ever fully enter into your personal journey through whatever you face: racism, injustice, marginalization; even murder. My only right to beg for a ceasefire comes from living with a different kind of pervasive threat – in which my child has a less than 20% chance of survival and less than 4% chance of the government ever acknowledging his right to that narrow margin of life.

I’ve stood alongside bald, gun-less fighters and weeping parents treated both justly and unjustly as they did everything possible to preserve life. And I’ve stood over hauntingly tiny coffins too.

There is very little I can do against the pervasive awful of cancer to preserve life for my baby, but there is so, so much you can do against the pervasive awful of hate-cancer spreading to someone else’s baby.

Did you hear me? You have the amazing ability to give life, not take it!

I’m not suggesting you lay down the fight. In fact, never stop fighting for what’s right and just. Just stop with the guns and the hate. Please, find another way – for the sake of the mothers, wives, and even children with empty arms, for the sake of better, greater, and more: STOP HURTING EACH OTHER.

I truly believe with all my heart that you were made for far better things than this.

Lovingly,

A Mother

In Which Chase Goes Really Fast

13403937_1047233472022928_5310873142492364519_o — [Credit: Iron Gate Motor Condos]

I’m not a car person.

Yes, I have had a favorite car in my life, I can recognize an expensive one when I see it, and I did the popular momentary cringe over our first mini van before wholeheartedly embracing the extra space — but I’m not a car person.

Until last week, that is…

For last week I stood on a red carpet and watched line after line of shiny, beautiful, cars I could not identify pull to a stop and load children with cancer into their perfect interiors, revving their engines and taking off with their tiny, precious cargo screaming joyfully – many of whom barely cleared the windowsills to see their route.

And then the organizers were on their radios, talking excitedly that “they were about a minute out” as a line of nearly 30 beautiful cars snaked up the long drive, all with “Ultimate Road Rally” magnets affixed to their doors and many with “We Rally for Sami” on their windshields – an homage to a dear brother, violently gone far too soon.

The rally drivers then joined the other drivers, each taking one child into the passenger seat and the child, eagerly clutching a rally map, helped the drivers earn more points before returning to the drop off. It’s hard to describe the beauty of drivers and organizers setting aside walking devices, helping parents adjust children out of wheelchairs, and then as the children exited the cars, their smiles were huge, their arms were laden with gifts, and I saw softness, joy, and even tears in the eyes of these tough drivers with their breath-taking cars. And how I wish you could see what I saw.

But perhaps my favorite memory of that day was the two brothers in the shiny black…I want to say a Mustang, but like I told you, I’m not a car person…can we just leave it that it was shiny and black and absolutely gorgeous?... Anyway, the two brothers, took two of my darling boy brothers out for a spin, as as they returned, I could see the tops of Aid and Chase’s heads and hear their laughter and joy. No doors opened to exit the boys, but one of their escorts simply stuck his head out the window with a giant grin and said; “They want to go again.” And with that, the car leapt forward with a roar out of the drive and I could hear Aidan laughing and Chase screaming “Go faster! I feel like I’m going to throw up! This is AWESOME!!”

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And all those drivers? Well, besides giving my kids one of the best afternoons of their entire lives, they raised $30,000 for Cal’s Angels.

And me? Well, I’ll never see those beautiful cars the same way again. That day changed me a little. Now, even though I still can’t identify what I’m looking at on the outside, I see so much heart on the inside and it blesses me.

“I know Sami would have wanted us to do something special. We couldn’t save his life, but there were lots of kids’ and their families’ lives that we touched.” – Omar Salaymeh, Marketing Consultant at Chicago Motor Cars, Founder of Ultimate Road Rally, and Sami’s dear brother

**With gratitude to Cal’s Angels, Omar Salaymeh, Ultimate Road Rally, Iron Gate Motor Condos, and all the amazing drivers and workers who made this wonderful day possible**

Dear Hospital Parent

My dearest Fellow Parent and Partner in the Awful Fight,

First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.

There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.

First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.

Chase in post-op; sleeping off the anesthesia

I know it feels like life is ending, but it isn’t, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.

Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.

Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.

Chase with some of his "circle"... #SquadGoals — Chase with some of his “circle”… #SquadGoals

Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.

There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.

Signed with love from the trenches,

Ellie