The Last Days
Strange the way it feels like the last days and simultaneously like the beginning.
A lot of events in life are like that. Some of them happy events …this was before we got married and this was after.
Before cancer. Except I catch myself looking at pictures and thinking this was before cancer. And then a month or so later wondering, I wonder if the tumor had started growing. Was this really before cancer, or just before we knew? Similarly, I think we will always say, pre surgery and after surgery.
Liam went back to the hospital for methotrexate Thursday. David switched out with me Friday night instead of Saturday night so I could start packing.
My friend came to help me for a few hours. Unfortunately, we had to get Covid swabbed which took an hour and a half out of my precious time. I knew Liam had a repeat MRI Friday during the night. When I picked David up for the swab he handed me the radiology report and said, “You need to not freak out when you read this. It grew again.”
I read the measurements. We knew it grew. We could see it. But seeing the measurements in real numbers was horrifying. It had grown 2 cm in all three directions yet again. I was particularly worried about the neurovascular bundles because they said there was only milimeters to spare.
I just couldn’t understand.
I kept feeling a sense in my soul that the work was over. It was time to speak gratitude for what was done; but this? This was shearing pain. I wondered if we would get there and find out he had to have an amputation after all? If they couldn’t save his neurovascular bundle, his leg would be useless.
I drove back home feeling deep, deep grief. Confusion. Fear.
And then I heard it. The same songs. The same words. Filtering through my consciousness, asking me to believe.
Liam was discharged Sunday afternoon! We were so grateful!
Monday morning I sat in our quiet house, praying. So many children love Liam and are praying for him and I’ve prayed that God would be gracious with their hearts. I keep thinking about the growing unrest around us and I wonder sometimes how our children will do with their future. Will they have what it takes to stand for Jesus and truth no matter what? I felt myself wondering / asking / praying if Liam’s story could be part of growing so many kids’ faith. That they would see a God who is able and that seeing prayers get answered would give them a foundation of faith that would let them stand up against whatever life throws at them?
A friend sent me a message telling me that she recently read a quote that faith is asking once for something and then thanking God for the gift, even before we can see it. Over and over, God confirms thoughts in my mind like this. The work felt done. And now this reminder.
I thought I was fine. Then I went upstairs to take a shower and my body started shaking all over as I began to hyperventilate. Breathe, I reminded myself. Breathe. You have to breathe. I tried, but I nearly blacked out. I had made an urgent appointment the day prior because of debilitating pain in my right shoulder. I didn’t know if I should try CST, massage, or chiropractic. I needed all three and had time for none. God kept bringing the name of a CST person I’d heard about to my mind so I messaged her and she asid she’d work me in. I called a friend to pick me up because I didn’t trust myself to drive. My body was succumbing to the stress.
The appointment was divinely appointed by God. She is a believer and prayed such specific, healing prayers over Liam and I as she worked. I cried some of the time and some of the time I caught myself lifting my hands in worship. “God will bring the people to you.” I remembered that phrase and I knew God had brought her to my mind over and over the day prior for a reason.
That afternoon we finally got all the insurance codes approved. Literally in the nick of time.
Tuesday morning we said goodbye to our other children and flew to NYC.
We had the same PALS pilot as our return trip which was really special! He let Liam fly the plane for almost thirty minutes!
As soon as we landed and dropped our luggage at the hotel, we went for an MSK covid swab. Because Liam hadn’t been swabbed since Thursday, I went to the consult alone and facetimed David and Liam.
Dr. Healey wasn’t terribly shaken by the tumor growth although I could see it gave him pause. “This isn’t the world record for distance, but we’re definitely reaching the upper limits.” He started talking about the options of LSS again and I said, “If it’s still an option, I know Liam wants the fixator.”
“Oh, it’s definitely still doable and I think it’s reasonable. It’s just going to take a very long time.” I asked Liam on the phone and he said, “Yes, as long as you can still get clean margins.”
And with that, I signed consent.
I walked out onto the sidewalk to catch an Uber. A minute before the driver arrived, the entire street was swarmed with upwards close to fifty police. They walked in groups, back and forth, peering into cars, poking in trash cans, back and forth over and over. Sirens blared and a helicopter hovered overhead. Finally after thirty minutes, they gave up the search, and the street cleared to let us through. We never heard who or what they were looking for.
We laughed ourselves silly over Peter Rabbit that night.
On Tuesday we spent the day going from one dr visit to the next. Lab work, meeting the MSK oncologist, X rays, meeting Dr. Prince, and somewhere in the middle we met another mom and son I’d been in contact with who is only a few weeks ahead of Liam in this process. It’s always a gift to meet someone in a similar situation, but it’s extra special with Covid.
All along, it felt as though we ran into hurdle after hurdle after hurdle. I told David that it felt as though satan couldn’t quite reach him anymore so he just threw blazing balls of fire into our path. And he wasn’t giving up now. There was 12-14 inches of snow predicted for that night. How were we going to get Liam to the hospital??? Would Uber run? Could he get in there without falling?