“I think this is the last ditch effort…”
The doctor’s eyes were tired but compassionate as the words settled into the clinic space around us. Chase lay on the exam table falling asleep and I looked to him wondering if he’d heard… wondering how much he understood.
“Okay…” I breathed, “Let’s try it.”
The treatment we’ve been using for Chase’s traumatized endocrine system is not seeming to work anymore. So, for the next few weeks, we will push a little harder and then do all the tests another time… one last time to see if Chase’s body can do what it needs to do.
A week before this moment, almost to the exact hour, I heard very similar words from another team: “I think it’s safe to say that what we’ve been trying isn’t working anymore”. Twice in a single week. And it felt like a one-two punch.
To be clear, this isn’t life and death. It isn’t like having a spreading cancer and running out of options. Chase’s migraines are unresponsive to any treatment we’ve tried so far…and his endocrine system is just refusing intervention right now in really unique ways. So it isn’t a spreading cancer, but it’s a little scary to bump up against the edges of the safety net – the known ways to help.
What comes next in this moment by moment? We are in the process of weaning him off certain things and trying other things for the headaches and even as I’m writing this, he’s resting with eyes closed after I massaged his temples and neck with some cooling lotion to give him even a little relief. The good news is that there are more options we can try to help the headache pain. His endocrine system though? That’s another story… I’m honestly not sure what comes next.
In a weird and removed way, it’s fascinating… growth plates that aren’t closing (in clinic… “Mom, can you tell us if he’s had any more broken bones recently?”), testosterone that is being produced, but just floating around because the brain doesn’t really know what to do with it. It’s fascinating, but it’s heart breaking too. The connections of the body and brain that were supposed to work together were irreparably severed by his brain tumor and treatment.
Yesterday, just two days after Chase was in the hospital for meetings, I found myself sitting in another hospital with a friend. The quiet clicking of the IV pumping fluids into her child’s arm creating a gentle backdrop to the moment.
This mom and I often talk about the chronic space of too much pain and too few answers and under the fluorescent lights and sounds of the pediatric infusion ward, with all of the question marks surrounding Chase still heavy on my heart, we agreed on these things …
We are okay. But also, this is not okay.
God is good. But also, this hurts.
This will be a meaningful part of our children’s stories. But we are so tired.
Do you feel the conundrum?
Maybe it’s a part of your own story too?
I think it’s okay to inhabit both of these heart spaces equally, dear ones. That’s actually (one of the many reasons) why I love the biblical example of David so much. He grew weary, and so many times, from his perspective the story remained unresolved. And yet he never stopped being sure of who God was. He knew his suffering was not wasted, he knew that bad things don’t equal a bad God, and he knew that good would ultimately triumph. But also, he wasn’t afraid to be on the floor and weep because life was exceedingly overwhelming and things were hard.
So here are my takeaways from this week with its’ medical one-two punch and it’s “not working anymore” vibes…
Hurt and hope can walk hand in hand.
Weariness need not erase faith.
And “last ditch efforts” only look that way now.
New chapters are still being written…
Moment by moment
[picture: pieces of sunlight while waiting on the oncology floor]