Chesed

The one thing that still felt reasonable about our staycation was today. Our church is still mostly virtual so we were planning to head to our friend’s house, watch church, and spend the day in their gorgeous swimming pool.

David and I kept looking at the forecast. It was predicted to be super cloudy all day with rainstorms throughout. There was a dark cloud cover predicted over much of central Virginia. What were we going to do? They live an hour away. It’s not like you just watch to see what happens and jump in the car if the sun happens to come out.

David said, “We really don’t want to sit in the house all day.” He was right. Usually we could have found lots of fun things to do; but the heaviness in the house was palpable. There was laughter, too, but it took so.much.work. to attempt normal conversation. We decided to go and pray in faith. I’d set up a facebook page to keep friends and family updated and suddenly hundreds of people were praying with us, too.

We got up and loaded the van under deep grey skies. The closer we got to their house, the lighter the skies got. By the time we arrived, the sun was more present than the clouds. By noon, we were under bright blue skies and gorgeous, warm sunshine! Throughout the afternoon several storms circled around on different sides, but always, the sky above us stayed blue.

The swimming was phenomenal. Trell’s grilled wings should be famous. There’s a startup horse therapy ranch on their farmette and they arranged for the kids to have rides. But the very best gift was the gift of their presence. It’s strange how desperately alone you feel when something like this happens. To have friends who can be with us in fun and in crisis is a gift we will never take for granted.

Today was supposed to be the kickoff of our staycation. We had so many fun things planned. We did a staycation last year and loved it! It’s challenging to travel with little ones and sometimes tough for us to find things our entire family enjoys because we have so much diversity in our kid’s ages and interests. By doing a staycation we could save a ton of money, do some much needed home repair, cook around food intolerances, and then still go do fun things in short spurts. We were going to rent a pontoon and a jet ski one day, swim at a friend’s pool, camp beside a river, hike Humpback Rock (if Liam’s leg tolerated it) and paint the barn.

Suddenly our vacation was turned upside down, just like our lives.

The boys were invited to an activity with a bunch of kids from church and we didn’t say no. Staycation or not, we weren’t sure how many more chances Liam would get to do social activities in the few months. They had a great time playing together and then a time of anointing and prayer for him.

Meanwhile, I was trying to find as much alternative advice as possible to help support Liam’s body through chemo. There are a lot of things I’d do if it were me; but this is his story. Some things we tried for a bit, like blending a whole, organic lemon rind and all with water, but after a few days he wasn’t having it. I read about keto diets and plant based diets and Mediterranean diets. There is so much information and so many claims it is completely overwhelming. Mostly I learned that the word cancer is very, very, very general word and that what helps one type of cancer can actually wreak havoc in another.

He’s only twelve, but he is twelve. Somehow we want to find a way to protect him from as much as possible yet give him a level of ownership and choice.

Liam walked out to the living room when he got up, eyed the recliner for half a second, and walked past it toward the couch. We all like the recliner best at our house; but first thing in the morning it’s my coffee spot. “You can sit there, Liam,” I said.

“No,” he said. “That’s your spot.”

This is Liam. He always looks out for others and I knew nothing would change just because he had cancer.

“Liam, you’re fighting the hardest battle of anyone in this house. Everyone wants to take care of you. If the recliner is more comfortable for your leg, then sit there.” He tilted his head a little as if to say, “if you insist,” and sank into the recliner. That’s Liam. Not a bone of entitlement in his body.

My friend’s, Rosy and Marla, came and scrubbed my house from top to bottom. There isn’t a gift in the world that could have meant more to me that day. Restored order and cleanliness and peace couldn’t bring our world back to order, but it allowed my body to relax a little and gave me the much needed space to answer phone calls from doctors.

I’d started reading everything I could possibly scour up on the internet about osteosarcoma as soon as I got off the phone Monday. Even though she’d said it looked like osteosarcoma or ewings, my brain locked into osteosarcoma mode and never looked back. It’s strange the way God tells us things even before we know them. Sunday night before his xray my last words to David were, “I’m afraid Liam has cancer.” We’d thought it was muscle for so long, but too many things were falling short. I think it was God paving the way and softening the blow a tiny bit. And in the same way, He provided comfort and direction for my heart before my brain was too traumatized to receive it. Four days before the Xray a friend sent me this song. I thought it was for that moment, and it was. But in the days to come it would be played almost on repeat.

Today we met our oncologist. Somehow you never think you’ll push the elevator button for that floor.

I was still in my pajamas when I realized the oncology office had been trying to reach me the day before. Liam was scheduled for an MRI and CT, both with contrast and then an appointment with the oncologist. We should have left ten minutes prior. I called a friend to come stay with the girls, woke Liam, grabbed Harrison out of bed, grabbed a diaper bag, shoved some Lara bars in it and we sat in the driveway ready to pull out until my friend got here. Not exactly the way you want to prep for five to six hours at the hospital, but it works.

God answered our very specific request and gave us such a kind doctor. She said we really don’t know what we’re looking at until we have a biopsy. My hope rose just a little, but when I told Liam later he said, “Mom, you know what happens when you do that. You just crash again later.” People know their own bodies. Liam is always the positive one. And in that moment I knew we didn’t need a biopsy except to tell us what kind of cancer was in his leg.

That day Liam limped less than he had in weeks. I was carrying Harrison and a huge diaper bag and struggled to keep up with him. I remembered Paul’s prayer the night before. Maybe God had healed him.

Liam had a lot of ongoing pain, especially in his knee and leg. Every once in awhile he would get a sharp, stabbing pain. He would joke, “Well, the cancer just took another bite.” It made me want to laugh and cry all at the same time. How had such a ravenous monster dared to grow in his leg?

That night as we sat to discuss what we’d been told, Harrison got up and walked a few steps, tumbled, laughed, walked a few steps, tumbled, laughed, walked a few steps all around the living room. I suddenly realized he hadn’t taken any steps since the night we told Liam what the X ray showed. Was God reminding me that Liam would rise and walk again?

It’s been so dark. Just complete and utter silence from God.

I pulled myself vertical in the morning and reached for my Bible, aimlessly flipping it open, not knowing what I was even looking for. I stopped to read a page and realized what I was reading.

“Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord, an everlasting sign that shall not be cut off. ” Isaiah 55:12-13 I didn’t even ask. My heart leaped in my chest and I knew God wanted me to believe.

Liam was our miracle baby. It seemed perhaps Adam was going to grow up alone. I begged God over and over for just one more child. No answer. Please just let him have one sibling. One morning I distinctly felt God asking me to pray that we would conceive a baby that month. “I can’t,” I said. I’ve been disappointed so many times I don’t think I can handle the disappointment if you say no again. I’m afraid I won’t believe in you anymore. The command was so clear. “I want you to ask me to conceive this month.”

“Help me,” I cried. Slowly, haltingly, I started to utter the words and the dam of tears broke loose. Instantly the room was warm and bright with rich sunlight and I felt a flush in my abdomen. Several times the next few weeks when David would pray I would feel a slight flush. Was God really talking to me? That month there was a purple positive on the stick.

Now here I was again, desperately longing for a word from God for Liam. And here it was.

David had asked the boys to get a few songs ready to play at our outdoor church small group gathering. As I listened to the songs they chose I marveled at their faith. How, as a teenager and preteenager, did they already have such profound confidence in God? Tears overwhelmed me as I listened to them lead our group in worship, “Oh, death where is your sting? Oh grave, where is your victory? Oh, church, come stand in the light. Our God is not dead. He’s alive, he’s alive!”

At the end of the evening, Paul asked if he could lay hands on Liam and pray. He rebuked the cancer in his leg with authority. If there’s one small thing I’ve learned about prayer in the past ten years it is this. When God asks me to pray a certain way, I need to pray that. Sometimes I feel a need to ask God to help us to submit to something. Sometimes I feel a need to ask for or declare something with authority. Most of the time, I don’t have a strong sense and I think that is also God, teaching us to find our way to Him. But when I sense something, I need to personally pray that thing in obedience. For that reason, I hesitate to ask people to pray a certain way. I hope that when I share requests regarding Liam, that people will pray as God leads them. I loved that Paul prayed with authority because he sensed God asking him to do so.

As I rocked Harrison to sleep that night, our pastor’s wife sent me a message saying she was praying for us and as she prayed she looked past at her open Bible and saw this verse.

I didn’t realize it was possible for a body to be so traumatized by a few words. I finally fell asleep only to wake up repeatedly with my heart pounding as though it would leap through my chest wall. My breathing so rapid and shallow and then sometimes not at all. “Breathe,” I would say to myself. “Make yourself count to three slowly. Breathe. You have to breathe.”

When morning came my body trembled uncontrollably.

Breathe. You have to breathe.

As I drove home from taking Adam to work, lightbeams shafted through the trees. I realized I was unconsciously singing, “Light of the world, you stepped down into darkness. Open my eyes let me see……” Oh, Jesus, please help me see.

Later that day as I was sitting with Jesus and thinking about Liam I had a vision. It only lasted a few seconds, but I was certain it was a message from God. Liam was standing in front of me surrounded by a thin rim of light. The light was brighter than anything I’ve ever seen, but it was surrounded by a thick, impenetrable black cloud. In the same instant my mind remembered a conversation I’d had with Liam a few weeks earlier. He’d been playing with a neighbor who told him we need to take the pillow and blanket off our front porch because it looks like a person. In the same conversation he told Liam that his sister’s boyfriend talks to dead people.

I’m not an interpreter of dreams, but I sensed in that moment that this battle was spiritual as much, if not more, than a physical fight. The words that kept coming to my mind were words God had impressed on me the summer of 2019. “Praise precedes the miracle.” I wasn’t sure what all was ahead of us; but I felt very strongly that we were about to fight the powers of darkness like never before and that much of our warfare would be through praise to God.

Liam wasn’t ready to tell people at first, but by Tuesday he wanted prayer support and wanted people to know. As soon as people started praying, my heart stopped racing. That night we mercifully all slept through the night.

My mom had a conversation with Liam. She asked him how she can pray for him and he said, “Can you pray for my mom? She took this pretty hard.”

It was supposed to be a simple X ray. The preliminary thing we had to do before the consult with an orthopedic surgeon and a probable MRI. But in my gut I was pretty sure it wasn’t.

On Thursday when Liam’s pediatrician called and said he needs an X ray I balked. “I’ll take him on Monday, but I’m not taking him today. Liam has given up so much this summer. He hasn’t gotten to do fun things because of Covid plus he’s had this limp all summer and I am not taking this trip away from him.”

She hedged. “I don’t think we’re actually going to see anything on the X ray.”

I didn’t. “He needs this trip. He’s given up so much. I can’t risk seeing something on X ray and ruining his annual three day canoe trip. I promise I’ll take him on Monday. He’s mucked around with this all summer. He needs this trip emotionally.”

“Ok, I’ll go ahead and request the consult though so we can get the ball moving.”

When Liam got home on Sunday he threw up from exhaustion. He’d paddled five fast miles in a little over two hours that day, some of it alone, with his cousin a year younger helping the rest of the time, and kept up with the men on the trip. Even so, it didn’t seem like him. He was limping more, too, and he stumbled going across the threshold of the basement. I bit my lip. That wasn’t the first time he’d stumbled and almost fallen.

We walked in for the X ray and the tech invited me in to the monitors to avoid radiation. She shot the first picture and I caught my breath. Dear Jesus, have mercy. That is not ok.

We drove home. I tried to pretend everything was normal, but I sneaked to the bathroom and googled what does osteosarcoma look like in a femur X ray. I wasn’t done reading the horrible words when the phone rang. It was our pediatrician.

“Hey,” she said. “I don’t have good news.”

“It is what I think it is, isn’t it?”

“Yes.”

I slipped out onto the front porch, leaned against a column, stock still. The silence of that moment forever incongruous with the complete splintering of our world as we’d known it.

I wonder if I’ll forget the rest of our conversation for the rest of my life. There are moments that get etched into our brains so deeply we never forget them. The moment David and I first held hands. The way it felt when our babies emerged, wet and warm, and I held their little bodies. And shattering moments like these when you don’t know how to scream and crumple simultaneously so you just stand still.

Meanwhile Liam bounced around the house. I called David. I tried to make dinner. Liam sat down and played “Only Time” by Enya at the piano (he’s never seen sheet music for it in his life. I stood and videoed it and used every ounce of strength not to sob my guts out.)

We tucked the girls in with books and told the boys we needed to talk to them about something. Harrison took three steps in front of David and when David stood him up again, he did it again. And then again. What a night I thought. One child takes his first steps. And I have to tell the other there’s a monster growing in his leg.

That night wrecks me every time I think of it. The boys could tell something unhappy was up. Their guesses made me realize how much reality had already begun to sink in for me. “I’d take any of those,” I said. “Liam has cancer.”

“I have cancer?” Liam half whispered twice in disbelief, touching his leg. I nodded and moved in close. “Can I hold you?”

His grown up, independent, athletic self nodded and crawled into my lap. David moved in close. We sat there, arms wrapped around him. When we finally started talking again I asked him if he had any questions or anything he wanted to say. He shook his head no. “There’s just too many things going through my head.” Later when I asked him again he said, “It feels like my world just stopped.” Me too, buddy. Me too.

After a long time we prayed and David went to tuck in the girls. Adam went to bed. Liam and I talked and cried some more. As we were getting our probiotics before bed his voice broke. “I guess I’ll just remember Jesus and how much He suffered and use Him as my example.”

He’s had quite the week. Last Saturday he sprained his ankle and then reinjured it Sunday evening. I pulled out our ACE bandage and he mostly stayed off of it, but by Tuesday morning he couldn’t bare weight on it at all. It seemed an odd timeline so I took him along to our chiropractor who is knowledgeable about sports injuries. Suspicious of a fracture he sent us to the hospital for X-rays. Radiology said no fracture so we returned the next day for continued sprain treatment. However, things were worsening instead of getting better and the chiropractor felt suspicious there was a fracture in the growth plate that can’t be seen on Xray.

That afternoon Liam’s pain shot off the charts completely out of control. When I called everyone for dinner and the kids said Liam doesn’t want to eat I went to investigate. He’d hunkered down completely under the blanket so even his head was covered and lay there sobbing. When I unwrapped his ankle, his whole body was spasming and writhing. David carried him to the van and we headed in to see the on call pediatrician who said the same thing. Probably a sprain, possible growth plate fracture, plus and a referral to ortho. The next day ortho listened, tried to touch his leg, noticed the posturing and said, hmm, this looks like amplified pain syndrome.
Her baseline diagnosis after Xray was the same. Sprain, can’t definitively rule out a fracture across the growth plate, and after she saw the photo of his purple leg she added amplified pain syndrome. As she explained the way kids’ nervous systems sometimes go haywire after a minor injury like a sprain, the escalating pain finally began to make sense.

Sometimes, for unexplained reasons, the pain signal short circuits and instead of reaching the brain, it hits the autonomic nervous system where it affects multiple systems causing vasoconstriction to the point of shutting off blood flow to the affected area (the way Liam’s leg would suddenly turn completely purple) which in turn built up lactic acid increasing pain. Because it can’t be processes in the brain, the pain signal continues to escalate and escalate. It also causes extreme skin sensitivity (Liam was so sensitive she couldn’t even evaluate his sprain) and sometimes posturing. She decided to put him in a walking boot, partially because she couldn’t completely rule out a fracture even though it seemed unlikely, but mostly because he was posturing so significantly she said he could end up with contractures.

Thankfully, he’s off crutches and down to just a boot. And thankfully his pain has decreased significantly. He’s back to trying to shoot baskets with one foot, hobbling through hallways with speed, and hoping against hope that he’ll heal enough to go on their annual skiing trip this year.