Whiplash
11.6.20 Today was our appointment at CHOP for surgical consult. The surgeon there cut straight to the chase. They read the MRI and the tumor didn’t shrink. It grew. They say UVA’s initial measurements were off. When I said that’s completely opposite of what UVA told us she shrugged and said, “they may have measured inflammation instead of tumor.” I said there were dark places they thought they looked moth eaten like dead spots and she said, “It could be hemorrhage. Sometimes the tumor grows so fast it outgrows its own blood supply and kills itself because it can’t keep up with its own growth demands. I can tell by his X-ray this morning that it didn’t calcify the way we would expect it to.” In other words, she clearly didn’t think this tumor was chemo responsive.
If we want to get rid of Liam’s cancer cells 100% we should amputate at the hip.
His other options are limb salvage surgery … cadaver donor bone versus a metal rod. When Liam said he wants a donor bone she said she’ll try but she’s having a horrible time getting them since COVID. A donor bone would allow him to keep his own knee, but it would mean a year before he walks. A rod would let him walk the day after surgery, but he’d have to have a knee replacement also and those have to be replaced every twenty years give or take.
She also said there is very little margin between the tumor and the neurovascular bundle, literally millimeters. There was a possibility they wouldn’t be able to do it; but she would try.
I asked about rotationplasty and she said she doesn’t think he’s a candidate. Not that we wanted it; but I was grasping for straws to avoid amputation.
When we left her office to head for another Xray for donor bone measurement, I stopped short. There on the desk in front of me was another rainbow. It was like God told me right there. I’m still here. The promise isn’t negated.
When we saw the oncologist an hour or later she was slightly less depressing. She said she’d talked to the surgeon who said she is reasonably sure she can get clean margins which made us feel a little better. And she agreed that both she and the radiologist had obsessed over the CT and they felt certain the nodules in his lungs were inflammation, not osteo.
Still, so much whiplash.
So much fear.
So much darkness.
This made it feel like a losing battle.
My sister, Christy, and her son Zac had flown to Philadelphia to be with us while we were there. It meant we could take Adam and Harrison along. I was so grateful not to leave Harrison overnight again, to have Adam along for Liam, and profoundly grateful to have them there when we got such horrible news.
The three of us walked back into the apartment and Liam said, “Lies. All lies. Everything the radiologist back home said isn’t true.”
Christy and I left after a bit to get coffee and walk / talk at the park. I was so random, flipping from one conversation to the next. My brain simply reeling from yet another blow.
We took pictures with our phones and wished for my real camera. Choosing to laugh in the golden glow of light felt almost sacred. When God says, “She laughs without fear of the future,” it is not because we power through; but because of a supernatural knowledge of His presence while encased in mire.
