This picture pretty much sums it all up: yogurt, butter, milk… And a light-sensitive, temperature-dependent medication to be injected with needles – on which we have yet to be trained.
This is something I’ve been wondering about: how do parents put needles into their children’s tender skin? Will it be easier or worse than the precision of a central line? I don’t know if I have the strength for this, and I’ve done an awful lot.
The story contained in the picture of the fridge is so normal. …and yet it’s so NOT normal.
In the Fall of 2012, Chase wandered the halls of the oncology ward while I diligently followed, pushing his IV pole with loving care (and not a little trepidation). As we paced, we crossed paths with a father pushing his young son in a stroller (IV also in place) and as families often do, we stopped to talk.
The boy in the stroller was a little younger than Chase, but they stared at each other earnestly. And I do believe it was the first time Chase really saw another little boy who looked like him with the hairless head and the white skin and the tubes protruding from his body. A curious knitting together.
The dad and I exchanged stories cautiously for no one ever wants to pry into the pain, yet there’s almost always the desire to know you’re not alone in this decimation of the life you’d envisioned.
As we spoke, I came to know that their diagnosis was fresher…and I felt like an old pro. We’d been devastated since July. They’d only just started.
And the crazy thing was… statistically speaking in that Fall of 2012, Chase was supposed to die – his cancer defied his chemo, his body routinely on the verge of giving in. Chase was supposed to die…and Lucas, well, Lucas was supposed to live.
That day, I watched the shock and pain spring into the father’s face as the dawning realizing hit that we both had death sentences, but one of us seemed more likely to suffer that fate. And that look on his face in the Fall of 2012, the shock and horror and beyond was not unlike the look in his eyes when Bob and I hugged him close while we stood beside Lucas’ tiny coffin – not four years later. We’d barely celebrated remission. Nobody saw the huge lung growths coming.
There is simply no accounting. There are no good words for what it was like to see such a small coffin and the hands that pushed toys around the playroom next to my son – stilled forever in eternal sleep.
And his parents and brother still breath.
There are no words.
But I write this out today to honor Lucas and for the sake of his parents and brother too. Sometimes, there is absolutely nothing good to be said to those asked to walk this horror, but we can remember. We can sit with them in their pain – inasmuch as we can ever understand that which we’ll never understand.
So, take the story of Lucas (how I wish you could have met him and known a little of his amazing life), hug your loved ones close, and reach out to those around you who are grieving…who must still draw breath when a part of their heart stops.
“Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well. Nothing is hurt; nothing is lost. One brief moment and all will be as it was before. How we shall laugh at the trouble of parting when we meet again.” Henry Scott-Holland
Looking forward to The Day...
Moment by moment.
Chase and Lucas in the oncology ward playroom, Spring 2013
I know I’ve said a lot of this before, but today, it needs to be said again: Each despairing, awful pit looks slightly different, but we’re all down here, in here together.
Your emotional and physical survival of everything from the next breath to the next decade will be almost as trial-and-error-ridden as your sweet baby’s treatment journey – just know that right now and know it’s okay too. It’s normal. Well, more “normal” really. Life circumstances just tried to cut you into tiny pieces with words alone – words like “cancer” – and continuing to breathe in these days is a victory not to be discounted.
Self-care when your baby’s in the ICU seems wrong and even selfish, but it’s not, I assure you. No matter how your inner voice wants to condemn you for anything short of laying yourself out next to them in the same pain they’re experiencing, please, please remember that your darling child’s care is only as strong as you are. You are the advocate and the voice, and 99 times out of 100, the responsibility of medications, schedules, feedings, sterilizations, etc, will fall to you. I’ve found it’s much easier to deal with it when I can see straight.
So, with that in mind…
Rest when you can. Trust me, there’s a reason sleep deprivation is used as an alternative questioning tactic in military protocol. When Chase was in treatment, I would have confessed to anything and actually had to stop driving because I was seeing wavy lines and shadows in the corners of my vision. Having a pediatric cancer patient is not unlike having a brand new baby in this way – please try and sleep when they sleep. You’ll need it.
Walk out of the hospital.For real. Even just down to the sidewalk in front of the building and then back. It sounds like the tiniest thing, but if you don’t make a conscious effort to incorporate the outside world in even minuscule ways, it will shrink and then go away entirely – leaving you with nothing but the cancer – which isn’t mentally healthy. And, let’s face it: who among us wants to give this awful terrorist of a disease that kind of credence in our lives? [hint: not me]
Seek a community. Church, friends, family, other cancer patients. Get involved on some level. Don’t let cancer take up all your mental and emotional energy. It doesn’t deserve that much from you. See also: my previous point on world-shrinkage.
See your dentist. Yes, I said it and meant it too. There’s a reason I don’t like to smile with my lips open. When you spend days being shuffled from room to room for appointments and rushing to emergency rooms, you’re just trying to remember to breathe, and maybe if you have an extra second; eat. There’s very little time for thoughts of flossing. So, from me to you: treatment will take it out of you on so many levels, but if at all possible, remember you have a dentist.
Have a mental safety net. Whether you see a counselor, talk to your spouse, or sit down with a dear friend, have someone there to keep you from feeling like you’re going crazy. Cancer is truly a war of it’s own kind. Your body responses will become conditioned to incredible long-term, high-stress scenarios and evidence points to this type of emotional and physical toll not being healthy for the brain. Some universities and medical institutions are even starting to pick up study links between traumatic pediatric care-giving situations and high rates of post traumatic stress – the same thing soldiers who’ve been to war face. This area is no joke, dear sister-mamas. Don’t be afraid to get help. You’re not going crazy. Your life is crazy. And no matter what you’re feeling, YOU ARE NOT ALONE.
There are so many other things I secretly want to throw out for you: go out with friends, have friends come to you, eat chocolate, read a book, cry, laugh, write, take a long walk… But the last thing you need right now is one more person telling you something you need to remember – yet one more alteration you’ll be making to your life. Psh… Chances are good you’ve already experienced enough alterations to last for three life times.
Whether you’re arms will one day be empty or atypically full, life is desperately short. No matter the kind of cancer story you’re called to, it will undoubtedly be a life-long marathon, not a sprint. So, stay the course, dear sister-mama. You are not alone.
Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?
Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand
How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.
But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*
Talking to new friends about hope
There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.
We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.
A dad and his boy
Will you pray for Chase tomorrow? We’d so appreciate it.
Yeah, there’s coffee, and laughter in abundance, but there’s something else too. Something that only comes forged in pain. I don’t have a word for it, but it’s there to be cherished – oddly like a terrible battle wound. See this? We went to war and we survived. Isn’t it strange that the hard things often knit us as close (if not closer) than the happy moments? They say that “love changes everything“, but sometimes I think everything changes love: kids, illness, job changes…and often just the weight of years and the passing of time. Love is not a static, stoic concept, but it is deep, and it’s meant to be unshakeable as it mirrors Jesus love for us and in us.
So what happens when things like cancer come at a marriage? In the video below, we take a few minutes to share a little of what we’ve learned and are still learning today.
Because life is messy, love is going to be messy too – that’s the primary reason we sat in front of an iPhone on a Saturday morning with no make-up, no good angles, or fanciness of any kind.
This is us.
We are real.
We fail more times than either of us would like to admit to each other or you, but we will fight for our marriage. We must fight for our marriage.
And please don’t kid yourselves…this isn’t always self-generated or motivated by flowery love, but rather, determined commitment. We had people during Chase’s treatment actually holding us accountable to talking with each other, spending time with each other, even being intimate with each other…because honestly, truly, and messily…if we hadn’t had someone calling us out and reminding us of our marriage, we would have ignored it and ignored us. This is the nature of stress and real life.
Fight for each other. Fight to fall into each other’s arms. Things like cancer will seek to take many, many pieces of us, but fight to make sure marriage is not one of those pieces.
With love, messiness, and a deep-rooted longing for Perfect Love…
Moment by moment.
[Disclaimer: After you watch this, you’ll know why I write instead of talking…or why my spiritual gift will never be filming and editing a cell phone video. Just sayin’…go with your gifts.]
