At almost twenty four hours past ten exact (and so long) weeks, there is news.
Chase is going to be having a full body scan.
They used to say that absolutely anybody who got thyroid sick like this had to have their full body looked at, but in the last few years, the doctors realized that there are some who need this level and others who really do not.
And herein lies the conundrum that has lasted much of these weeks set aside for his post-surgery healing: Chase’s cancer lies low and quiet in the area where thyroid sick people really do not need a full body scan, but Chase himself stands tall and proud at the other end of the spectrum. If we were being honest, I always picture Chase holding the “high risk” sign marching at the head of the “high risk” parade, leading everyone who follows him into even greater unknown areas.
So these last weeks, the ones who oversee his care here in Chicago have talked to different endocrine teams across the country asking; “Hi there, what would you do with a child like Chase?” (as we all do at one point or another…) And some have thought to stick to the guidelines of thyroid ultrasounds now and again, while others have said they would scan the whole body just to be safer than safe. And ultimately, there was no right or wrong path, just whatever is best for Chase. But what is best for Chase?
And so it came down to last night. And I thought I had the peace to hear whatever I was going to hear on the phone. I even thought I had the words I’d need to either accept or advocate…
In these weeks, I have prayed for wisdom and strength and told all the doctors that I feel unfit for this decision. Do you have any idea how beguiling the idea of a full body scan is to the average cancer parent who beats back founded and unfounded fear with every blink of their eyes? I am not equal to these challenges because the logical part of my brain parses clinical data even as my mother’s heart screams to GIVE HIM ALL THE TESTS NOW.
And then it came. The call last night… “I talked to Chase’s oncology team, and they feel that, given his complicated history, it would be far better to just go ahead and do the full body scan.”
And I knew such peace in that minute. Because each moment of care is ultimately about Chase being understood. And in that phone consult moment, he was known. At this time, it’s not necessarily the known cancer that is the enemy, but the cell secrets his body likes to keep quiet until they challenge him (and us) hard and fast. And now all the teams are on board around this idea: we are ready to be done with cell secrets for a while.
But there is a reason they hesitated to do this for him and it’s because the process is long and complicated. In order to ready his body for its close up, he will need to be taken off the medicine that keeps him thyroid-functional even though he lacks the actual organ, and he will feel, as they said yesterday, “not himself”. He will sicken and tire and just hurt for the medication we are keeping from his little body. The medication that just, in the last two weeks, has finally regulated and helped him to feel better. And it will take two full weeks to get him to this tired point. And then there will be successive lab days and they will marry with test days, and so the entire process, start to finish, will probably last two to three weeks.
But we will know. (at least all there is to know in this moment)
So, I exhale in relief, and Chase, well, he inhales in apprehension. Because in his precious mind, to look at the body is to find cancer. Every time there’s a new test these days, they find another mutant cell.
“What it…?” he says.
“We will deal and it will be okay.” I try to keep my voice even for him.
“But Mom, what if they find a new cancer and there isn’t a pill to take it away?” His nearly lash-less brown eyes are huge and his mouth twists around his emotions as he sits on the stairs and voices these too-big questions.
And God help me, I looked into his eyes and I broke and lied. Because there are certain things we don’t ever want to have to tell our children. “There will always be a pill.” Oh God, please don’t ask me to ever go back on my word to him…please.
But he knows me and he knows enough. “But what if there isn’t…?”
“We will always do as much as we can, my sweet boy,” I reach for him. “I don’t want you to worry for these things if it isn’t time to worry, okay?”
He nods. “Okay. Just tell me this. When I stop breathing here, will I start breathing with in heaven with Jesus and Mia?”
I swear that I stop breathing for him. How are these things even in his heart? “Faster than you can breathe, my love. Faster even than you can think.”
“Okay.” He nods as the fear fades off his face. In this moment, he is not afraid to die, as he sometimes is when he thinks about hospital things. Today he was just afraid to be alone and I could tuck that fear away for him, for a moment if nothing else.
“Tell me this,” I force a smile as I feed him the line I always do when he sits in the fear too long. “Are you planning on dying any time soon?”
He grins and jumps up. “No! I’m going to ride my bike, okay?” He pauses and switches to his most authoritative tone, “And hey, you need to tell my doctor that when they finally get this cancer out of me, I need to start my growth hormones again because everybody is taller than me.”
I smile back at him, thankful he is diverted for the now. “Do I look like your butler?”
“Yes!” He giggles and then is out the door and into the sunshine.
One minute is the agony of decisions.
One minute holds the beating back of brutal questions that have no good place in the head of a small child.
And one minute, we are riding bikes and being sassy in the sun.
This is life with Chase.
Moment by moment.
“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” 1 Corinthians 13:12-13