Radical Resection
I didn’t sleep much that night. The snow. The questions. The adrenaline. It all rolled together into restlessness. The snow outside was beautiful even if we knew it posed a challenge.
Liam did his surgery prep scrub the night before, and I wondered when he’d next take a real bath or even shower. I looked at his legs. Would he still have both of them in twenty-four hours or would they get into surgery and find the tumor had grown too much and all that was left was amputation?
Our alarm went at 4:15. At 4:30 we woke Liam for another hibicleanse bath. Would our Uber driver come? We needed to be at the hospital by 5:10. Downstairs, the snow was thick. The driver arrived and David helped Liam bravely, but slowly, wade through the snow to the car.
I breathed a huge sigh of relief when he was in the car. They were right. NYC doesn’t stop because of snow like Virginia does. We arrived at the hospital and I stepped into wet slush. Our driver backed in and out trying to get Liam as close to the curb as possible. David helped him step in the right places and we made it to the door. I held my breath. The very worst part is having wet crutches hit a tile or concrete floor. There were rugs most of the first ten feet inside and Liam dried his crutches well, then took it very slowly to the desk where we signed in.
Upstairs, we waited and waited. One of the loveliest humans in the form of a child life specialist came to be with him. Liam is twelve, but he’s accustomed to hanging out with kids older than he is. A lot of people tend to see him as a twelve year old and treat him like that or younger. She engaged with him so well, and kept us all entertained during the long wait.
At 7:30, I donned the bunny suit, and followed him to the OR. The guys pushing the bed asked him what he’s going to be when he grows up. “A doctor,” he answered. “What kind of doctor?” is always the next question. “A missionary doctor.”
“Really? That’s cool. What made you decide that? Did you meet a missionary doctor?”
“No, but our church supports missions a lot and I’ve read a lot of books about missionaries.”
I’m always drawn in by the gentle confidence in his voice. It seems as though he has such a strong sense of direction and wisdom that is far beyond his years.
The OR rooms at MSK are huge! They transferred him to the OR table and started putting leads on his chest and getting him strapped in. The anesthesiologist had already asked him in the holding area if he wanted something for anxiety or to make him relaxed and sleepy and he said, no. He wanted to see everything. He’s always so disappointed he can’t see the surgical knives. So he looks around and takes in as much as he can.
He drifted into lala land around 7:45 as the nurse anesthetist (who went to school at UVA!) and I talked to him about getting back out on the slopes at Massanutten. I gave him a quick kiss before they led me out of the OR and back to David.
It always takes a bit for anesthesia to get everything settled and stabilized and in this case Liam needed an epidural, also. David and I weren’t allowed to stay at the hospital because of covid restrictions so we headed back to our hotel.
The OR liason nurse (who’s name happened to be Virginia … such a sweet coincidence to connect us to home) called to tell us the first cut happened at 9:34. She sent us a text around 11:15 to say his vitals are stable and he’s tolerating anesthesia well. I told her I hoped he’s having good dreams about snowboarding and that we’re praying for everyone. “Well we can sense the prayers. There is a peace!”I told her there are hundreds if not a thousand people praying for him and for his surgeons by name all day long. Worship and praise happening all day long in our hotel room! Her response: “Praise God!!! I have no doubt HE is here!”
The day we signed consent, the nurse told me, “And you can self medicate. We won’t judge. Lots of parents do.” I was honestly a little dumbfounded because it hadn’t even occurred to me. We had fought so long and so hard to get here, we’d worried so much about his tumor breaking, this day felt in many ways like a celebration. We felt the weight of the surgery deeply, but our joy in answered prayer was equally palpable.
Our entire time in NYC felt as though we were being carried in a bubble. We could literally feel the prayers of hundreds of saints as we taxied through the streets from one place to the other and now today in our hotel room. I knew Liam was within that cloud of witnesses also.
Around 1:30 when she checked in at the OR again she told them they were being prayed for and texted David and I that it brought so many smiles. That made me cry. I told her, “Liam is incredibly gifted with music. He plays by ear and almost anything he hears. He has composed some of his own work and I think he will lead people in worship. This cancer has felt like as much spiritual battle as physical to destroy his calling. And all along the way God has brought us people to fight alongside of us and who acknowledge God. It’s an incredible gift.”
Her response really made me feel like crying.
“Wow!! At such a young age!!
Absolutely God has his hand on him!
I love this!
Ok so personal info
I sang with the Brooklyn tabernacle choir for almost 20yrs
So I love music
I love worship
No coincidence!!”
My heart felt so hugged by God. The gift of a connection with someone in Liam’s OR room with a similar passion for music and worship and deep faith.
I sent her the link to Liam’s song:
She text back, “Oh my word, Is he the one playing the piano and singing????? Now you have us crying. Amazing!!!! I can’t stop crying. I will never leave your side!!! 🙌🏼🙌🏼😩🙌🏼🙌🏼
At 3:30 we got the call from Dr. Healey. The tumor is out!!!! Dr. Healey got clean margins!!!!!!!!! His growth plate is saved!!!!! The neurovascular bundle is freed!!!!!!!! There is enough bone left for Dr Prince to attach the internal fixator!!!!! The tumor appears dead!!!!! We won’t know what percentage of it for a few weeks because they have to decalcify it before manually counting the cells. But he thinks we’ve been seeing expansion from hemorrhage/cell death!!!!!! Basically the dead cells caused it to act like a big sponge. He was able to save more muscle than he expected which is enormously beneficial for Liam to walk again!!!!!!!!! Liam is handling anesthesia well!!!
We were completely in awe of so many answered prayers!
At 3:50 Dr. Prince started with his portion of the operation to attach the fixator to the tiny bit of femur that was left. They were attaching a plate at the knee, a thin rod the length of the femur, and the acutal fixator at the top that would be magnetically moved to induce bone growth.
I thanked our liason for being my heart with Liam when I couldn’t be there and she responded back with,
“It has been an honor and a privilege serving you all today!
Father we thank you for your faithfulness and your hand of provisions! In Jesus name!
Amen
Love and hugs!”
The gift of her was almost too much for me to comprehend. I never met her and likely never will this side of heaven. But she did so much more than her job that day. She loved on our family as though she was part of it. And truly she is in an eternal sense. God gives the most gracious gifts to His children in lonely times.
At 8:35 Dr. Prince called as they were closing and suturing. He reiterated the negative margins and said everything went smoothly and according to plan. Liam ended up with a 20 cm gap. He shortened his leg by 5 cm to get the ends approximated more quickly. Liam’s knee bone was completely preserved and he had exceptionally good range of motion. The tiny bit of femur that was left was good, thick, strong bone with a good construct.
It would take a year or more, but he has good bones, he’s healthy otherwise, athletic, he has strong muscles, and a strong family and he thinks Liam is up to this challenge.
Liam was headed to the PICU and David and I simply collapsed into each other’s arms and sobbed in prayers of thanksgiving.
We are in awe, humbled, and so grateful. To God who led us so clearly and faithfully the past few months with dreams and signs and many confirmations and who was so gentle and merciful when our faith wavered in the darkness. He led us here, to the two men who are among the most gifted in the nation. And we are unbelievably grateful to the men and women who have studied for years, dedicating their lives to a high stress life that requires constant pressing in and learning to offer gifts of incredible talent, hope, and healing.
Liam’s battle will remain fierce. He has many mountains to climb. God is writing a story of faith, hope, and courage and we are humbled and honored to walk alongside. I’ve been singing this song since September. One day on the way to chemo I heard the words and they pierced deeply into my heart. Especially these,“You take what the enemy meant for evil, and you turn it for good.” I sang along , sometimes with faith, sometimes through tears at yet another negative report. Tonight I cried instead of singing at the magnitude of these words. This God will carry Liam through the excruciating pain of the next few days.