Somewhere on the 4th floor of the Novak Center clinic in Louisville there is a box. I’m not sure how it’s labeled or what the box looks like but I know what’s inside.
Inside that box the nurses keep dozens of brightly colored streamers, attached to sticks or dowel rods.
There’s probably a name for these things but I’m not a 4th floor Novak nurse so I don’t know what they’re called.
But all together, these streamer sticks are a party in a box.
Last Wednesday, April 19, one of those nurses took that box out of storage because it was a day to celebrate.
That day was Des’s last day of chemotherapy.
The end of maintenance. The end of treatment.
In his little clinic room he watched a superhero movie and finished his infusion of vincristine. (The same chemo he had on his very first day of treatment back in January 2021.)
The nurse flushed the line, de-accessed the port needle…and that was it.
A process that he’d been through dozens of times. But this was the one we were waiting for.
Then as a family, we walked down the hallway as a small crowd cheered him on. They waved those streamer sticks and cheered.
He proudly walked up to the bell near the exit, reached up to grab the rope, and gave it a ring.
Another phase complete.
And another one beginning.
Two years ago this day was the finish line. Now it’s a finish line.
There’s still more ahead.
His central line port will be taken out in a couple of weeks (a procedure that sounds surprisingly simple?!). He’s looking forward to the day he’s cleared to wrestle with his brothers.
His immune system will recover over the next three to six months. Returning to a normal 6-year-old level. The day is coming when he can play in the dirt again.
And tonight was another celebration; his last dose of oral medication. An appropriate dance party broke out in the kitchen. And Sara insisted we throw away the pill organizer.
Des was diagnosed with leukemia 834 days ago.
Our lives are marked forever by the last two years and all of those days.
But get this; Des has already started to forget.
He was only three when this started, so it makes sense. And really, I’m happy for him that he doesn’t have to carry the memory of some of those days.
There were so many times through treatment that I wanted to take the pain away. I wish I could have tag-teamed in and suffered in his place. If there was a way, I would take a turn just to let him rest. But as much as I wanted to do it for him, that was his battle.
And he won.
And now as the memory of those days slip away from his mind (oh, the mercy of God!) Sara and I hold on to them.
It’s our turn to carry that burden now. Now we step in and take the memories while he lets them go.
And we carry the burden of wondering…what if?
We go back for monthly blood tests. The “cure” date is 5 years away (he’ll be 11!).
A new finish line is laid out. And that probably won’t feel like a finish then either.
But again, I have to keep my eyes on today. We have today.
And today the boys went to a birthday party. Today Sara planned bread orders for the week. Today I picked weeds in the cool evening while the sun was still bright..
Some days are on just this side of perfect. But gosh, some days can be so hard.
I hope you’re well today.
Have you made someone happy,
or made someone sad,
What have you done with
the day that you had?
God gave it to you
to do just as you would.
Did you do what was wicked,
or do what was good?
Did you hand out a smile,
or just give ’em a frown?
Did you lift someone up,
or push someone down?
Did you lighten some load,
or some progress impede?
Did you look for a rose,
or just gather a weed?
What did you do with
your beautiful day?
God gave it to you,
did you throw it away?
.- Unknown
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