Today is day five of Chase’s first treatment. Every time they’ve hung another bag or started a new infusion, I find myself tensely thinking “Wait for it, this is the one that is going to make him code…”. (sidenote: a chemo treatment room is a great incubator for illogical fear)
Each day has brought new information and and sometimes overwhelming experiences…
Reality: this chemo is so powerful that we can’t even change his diapers without wearing gloves.
Reality: my son has a surgically-placed double hose into his chest (which will remain with him for the duration of his chemo) that I need to learn how to clean and care for.
Reality: he hasn’t eaten almost anything in over 48 hours and is on a constant IV for his nutrition.
Reality: one of the chemos is making his jaw hurt to the point where he cries out anytime he opens his mouth…even in his sleep.
I want to keep writing “reality” and listing all the other things that are bothering me or that make our life sound very extreme and dramatic, but just now, I need a reality check, and since you happen to be reading this, you are coming along with me.
Reality: my son is in the final day of his first round of six chemos and he hasn’t coded over any of them, in fact, his nausea is mostly managed by a couple anti-nausea meds and the nursing staff said he is doing incredibly well given his difficult protocol.
Reality: we live close to one of the top treatment hospitals in the nation in an age when they know what AT/RT is and can treat it (even as little as five years ago, this cancer was still fairly unknown)
Reality: “God is always doing a thousand things when he does anything. And we see but a fraction.” John Piper
Moment by moment…
Go Chase go! Look at how you’ve been able to navigate all of these things already, Ellie! And yes, it is God at work in and through you and through the staff and the chemo and so on. But moment by moment, you are adjusting to this new normal and doing so with grace. Love you, friend.
Made me cry this morning, Ellie. Strength. And grace. May you both be carried today.
Hi Ellie,
You don’t know me but I’ve been following your blog regularly for some time. I’m friends on Facebook w/ your sister in law Heather and your mother in law was once my piano teacher. Bobbie and I were at the same level in piano for years before I moved away (my name was Katy Vaitkevicius back then, but it’s been years, I doubt he remembers). I just want to thank you so much for your blogging of your experiences. We have been struggling through my mother’s cancer for years on and off and your strength and bravery during such a very difficult time is just so inspirational and so helpful. I wish I could be there to wave a magic wand and cure Chase and every other cancer survivor, and with God’s help I pray that a full recovery is not only possible but in his near future. Your strength touches more than just your family, it reaches out to those of us who do not know you too. I’ve shared your blog on my page and I know that there are many of us praying for your family and especially for your son. Thank you for demonstrating that strength of character, faith, and the ability to fight are all possible even under such difficult circumstances. May God continue to aid and bless you and your family through this struggle, you are in my thoughts and prayers. š
Wish I could hug Chase! Praying for his healing.
Praying for you and the amazing faith you’re demonstrating to be recognized by you in the mundane moments as well as the reflective. Praying for you. Praying for Chase. Praying for your family. My heart hurts with yours.