Over the past few weeks I've started to do some heavy duty counting. We are in the actual home stretch of treatment (as of today we are at 39 days to go!) and are starting to prepare for all of the end of treatment things - celebrations and plans and just getting ready. As we've neared this final stretch, I've had it in my mind for some time now to try and find a way to share perspective with you, our faithful army, on all that Ethan has endured over these last 3+ years of treatment. I thought that one way to do so would be to count up all of the things he's gone through - hospital stays and doses of chemo and sedations and such - and somehow give a summary of all of the things that have been a part of Ethan's life these last few years.
And so a couple of Saturdays ago, I gathered all of my notebooks and calendars from the last three years and sat down to do the work of counting.
It turns out the process of counting required actually reading. And so I read - through the notebooks and scratches of words that were both hastily and carefully written in those early days - desperate notes about how to take Ethan's blood pressure at home, how to administer chemotherapy into his port, care schedules for sweet Eloise, so many lists of things to bring from home to the hospital, shopping lists for our friends to gather our food and supplies, and endless notes of lab results and medical reminders for Ethan's care.
And, as you could probably guess, what happened next is the tears started to come. Lots of them. Here I was trying to gather some data to help share perspective on Ethan's treatment for others, and in the end it was me who needed the perspective. It was jarring and sad and emotional to sit so intentionally in all that we've been through over these last three years - to stare at it all directly in the face.
And as I sat there in all of the numbers and notes, I was confronted profoundly with the continual thought - this is why I'm struggling.
Because, if I'm honest, this last stretch has been tough. The stress of the last few years is showing in ever increasing ways for me physically and our entire household is going through the heights and depths of emotions as we all seek to process together what we've been through. Really, it's the process of working all of this out, right? - reconciling life before and life now, pondering what life will look like in the next chapter, trying to help both of our precious kiddos work through the many emotions, trying to figure out ourselves how to process the many emotions.
It's complex and hard to describe but it's all a part of this season we are in and the work that the Lord has set before us to do. And we're working hard (and sometimes not so hard) at working it all out. Letting the feelings come, watching them go. Getting angry, feeling sad, bursting with love and thankfulness, crying over what has been lost. Joy. Sadness. Thankfulness. Grief. Hope. Sometimes all at once.
And so, here we are. 39 days to go. And tomorrow, 38.
Ethan starts his last cycle on Tuesday (April 25th). Cycle 12. The last one. He'll have a sedation with intrathecal chemo - his last sedation with intrathecal chemo - and have IV chemo and begin his 5 day pulse of steroids. On May 24th he'll have IV chemo again - for the last time - and then he'll ring the bell - the end of treatment. On May 28th he'll take his last dose of oral chemo. The last dose of chemo pills. The last day of treatment.
It's all in front of us, so close. Winter for us has been such a long season and now - so close - spring. A new season on the horizon. Filled with new life and hope and yet the remnant of winter remains - it will always remain, to some extent. This season has changed us and impacted us and we are still working all that out. The struggle in all of that is real, and that's okay.
As many of you know we love to sing at our house and Ethan in particular will often have songs blasting on his radio on repeat for weeks on end. Lately, that song is the old hymn "Joyful Joyful We Adore Thee" - no small coincidence to me because the version we have on CD is from our church's hymn sing tour - it's energetic and filled with praise and seriously sounds like spring.
As we've listened to the song blast again and again (and again), the Lord has been using it to minister to my heart throughout these days of struggle and for that I'm grateful. Joy in the midst of the sorrow and angst and unknown. It's only the Lord who can make that possible.
- Joyful, joyful, we adore Thee,
- God of glory, Lord of love;
- Hearts unfold like flow’rs before Thee,
- Op’ning to the sun above.
- Melt the clouds of sin and sadness;
- Drive the dark of doubt away;
- Giver of immortal gladness,
- Fill us with the light of day!
(Author: Henry Van Dyke)
