“Yes, but how is Chase doing?”
We hear this question a lot. A desire not to hear medical information, or how our family in general is doing, but a genuine concern for how Chase is doing – especially emotionally. The more questions I’ve received, the more I’ve realized that I really should write about it.
From a physical aspect – I feel the need to address physical first as understanding who Chase is in the physical sense goes a long way to understanding how he’s doing otherwise – he’s lost all of his hair now. The radiation finally took his eyebrows and eyelashes, so he squints a lot. Something (it’s unclear if it’s the effect of the tumor, the residual cancer, radiation, or something that is yet unknown) has affected his speech and so it’s often garbled and interpretation is frequently needed. The speech, and his walk (he suffers from some minor weakness) both become more pronounced the more tired he is. …which is a lot these days.
The cumulative radiation effect is at it’s peak right now – even though he’s been done with treatment since December 12th – and he’s very tired. …four hour naps, walking across the house winds him, stepping outside exhausts him kind of tired. (this is something to watch in a child who hasn’t sat still since he was born…if then)
In the last three months, Chase has in turn suffered from insomnia and somnolence (sleep and lack thereof)…which makes for interesting days and even more interesting nights as the first thing he does (even in his sleep) is reach for his central line (a fancy access system into an arterial vein which allows for IV fluids, nutrition, medication, and blood draws without constantly sticking him). So, as you can well imagine, it’s hard to leave him alone…ever.
When we are home, Chase has labs twice a week and a dressing change on the central line once a week. For the labs, he is as good as gold. For the dressing change, he is still as good as gold, but it takes three people to hold him down. Despite it’s weekly occurence (which you would think would have him used to it by now), he hates it more than his brain surgery. It scares and enrages him whenever anybody even gets close to touching the line.
A side effect of the chemo is that Chase’s skin is very sensitive and depending on his frame of mind, he fights against being touched. This can sometimes involve a war strategy worthy of the Pentagon just to change a diaper, yet other times, he lays perfectly still and talks to us as if nothing bothers him at all.
And now, put aside the screaming, the kicking, the central line, the loss and pain and tears and hear this… children are so resilient. I wouldn’t believe it if I didn’t see it every day. This life is Chase’s normal and he lives and loves in it to his full capacity. He knows when the nurse is coming to the house and what she’s going to do and he helps hold lab supplies. And he knows that a fever means going to his “fishy hospital” and he gets excited to go see his nurses and doctors. And he is even used to the 2+ hours every evening of taking his oral medications and preparing/attaching his 16 hour IV bag…in fact, he looks forward to it because we snuggle on the couch and watch a movie while we work.
Chase has no paradigm for words like “malignant” or “terminal” and the percentages they carry with them. He is used to his cancer and is even (dare I say this) proud of it – as any small child revels in something they possess that their siblings do not. More than once, we’ve heard him hold it over Aidan’s head: “No, Aidy, you can’t come to the hospital with us, because I have the cancers and you don’t!” There are days when the cancer means painful or uncomfortable medical procedures (for him, this could be anything from a needle prick to a blood pressure cuff) and then he dislikes it, but even then… There was one evening that as I apologized to him as I had to give him a medicine he didn’t want, he put his arms around my neck and said; “It’s okay, Mom. The cancer is here, but Jesus loves us. It’s okay.”
So how is Chase really doing? He’s a breathtaking blend of cancer-produced maturity far beyond his barely three years and highly active, life-loving little boy. He approaches life with a take no prisoners, no-holds-barred, hold no grudges attitude tnat allows him to hug and kiss the nurses that he (30 seconds earlier) kicked and screamed at.
If I had to sum it all up, I’d be hard-pressed to find better words than those that Chase himself says…
“I’m so brave…”
Moment by moment.
[be sure to come back for part #2 of our 2013 update: “What’s Next?” posting later today]