Lightning Strikes Again
On Sunday afternoon David drove back home to Virigina. Our friend, Lindsey, came to spend a few days with us to help out. We’d probably survive, but it is so much help to have another adult in the house whether it’s homeschooling or bedtime or needing to leave for another doctor’s appointment and not knowing how long it will take.
Bedtime feels like a circus sometimes with the three little ones already and then Liam needs help getting into bed, having his bandages checked or changed, remembering to do the limb lengthening and adjusting pillows until his leg is comfortable.
We’re learning the rhythms and I’m getting faster at locking the wheelchair and manipulating the foot rests out of the way or in place and then lifting Liam’s leg so that it doesn’t hurt so much while he is in the process of sitting down; but I still don’t always get it right. And every time I don’t get it right, he hurts that much more.
On Tuesday Liam and I headed out in an Uber to see our surgeon for the first followup. I was so ready to be seen. One part of his incision didn’t look good to me at all. I’m not a wound care nurse. We used to joke that the CCU stood for Closed Chest Unit because none of us liked wound care all that much. This is the biggest incision I’ve ever seen in my life. It starts about an inch or two below his hip and goes the entire way down past his knee. There’s a second incision on the side where they cleaned out the biopsy track. And then four stab wounds where they inserted the rod and fixator up along the top of his leg and into his pelvis.
When the doctor came in he sat down. A few preliminaries and then he said the incision wasn’t healing well and there was a hematoma in his knee that would need to be surgically cleaned out. “But I’d need to go in anyway because we got the pathology report back and there’s still some cancer cells left in the portion down close to your knee.”
Breathe. I told myself. Breathe. In. Then out.
He went down all of our options again. Donor bone. Rotationplasty. Amputation. Or he can take off another two centimeters and hopefully this time we get clean margins. I knew in my head that the safest route at this point was probably amputation, but my head was swimming and I was having to tell myself to keep breathing and it was clear Liam wanted to continue the plan. So did I.
He was reasonably sure he could get clean margins. Last time the quick frozen section had looked clean, but when they decalcified it in the lab and looked at it, they saw cancer cells.
We were already pushing the limits with a twenty centimeter gap. I didn’t see how they could possibly take more and make it work, but I’m not the one who has any knowledge of this.
But he wasn’t finished. Liam had very poor necrosis (cell death) so he would likely need to switch to a more aggressive chemo. I asked him if they gave him a percent. He looked at me and held up his hand as though he couldn’t bring himself to say the words. Five percent.
5%
Breathe, I commanded myself again and even as I did, I heard a voice in my head say, “I shall not die but live, and declare the works of the Lord.”
I’ve heard “poor necrosis” and terrified parents in the osteo groups and they’re usually talking 30-40%. This was 5. The single most important factor was getting clean margins and we hadn’t gotten them. Yes, we’re going after them again, but we didn’t get them which means they were opened up for distribution in the mean time.
I have no idea why it feels as though God continues to speak to me of a miracle and medically speaking everything goes in the wrong direction. But until I no longer hear it, I will hold faith in a miracle. Because to do anything less would feel like idolatry.
On the way home our turban clad Uber driver asked why Liam was in a wheelchair. When I explained he said, “You pray to God and everything will be alright.” Pause. “You keep going to the doctors and do the treatmen, but you pray and pray and pray and everything will be fine. That’s what makes the difference.”
This is gut-wrenching to read. I’m so sorry. May God heal.