Chesed

We were guided so graciously through these days on intensity. PALs granted us a free flight to and from NYC which took an enormous load off of the quick trip we needed to make for surgical consult.

We flew up Wednesday, got our COVID swabs, and then hung out at the hotel. Once again Liam was struggling with the food. He was still somewhat nauseous from the Cisplatin, but being in the city always complicates it. He loves to roam the woods with Mia, to live wild and free. As soon as he hits the city he starts to shut down. He doesn’t like the noise and all the buildings and penned in feelings. I was beginning to wonder how we were going to make it with surgery. He hardly eats and his affect goes mostly flat.

Thursday morning our tests came back negative. David was working as much as he could. Liam said being an only child is overrated. You get too much attention. I suspect that what he wanted to say is that it’s boring without his siblings.

I was spending time with God, feeling a need to settle my heart and hear from him. I flipped through my Bible, my eyes landing on these verses.

“I am the LORD your God who stirs up the sea so that its waves roar — the Lord of hosts is his name. And I have put my words in your mouth and covered you in the shadow of my hand.” Isaiah 51:15-16

You know, most of us gravitate toward the God who calms the seas. We really like the story of Jesus in the boat, quietly raising his hand above the tumultuous waves, and effortlessly telling them to settle down. We want to live in the places where God creates calm and harmony. God is there.

God is in the storm, too. Sometimes He actually stirs it up to a frenzy. It’s not fun to be in those places. But always, He will cover us. This time the phrase, “and I have put the words in your mouth,” kept jumping out at me. I have struggled with the way God has called me to believe in a miracle for Liam. The way He speaks messages to me over and over. This isn’t the way I’ve experience life or God or Christianity. Even last summer when we prayed so much for Harrison and didn’t get the answer we wanted, I felt God telling me that I was stronger than I thought and that He believed in me, not that I should believe in complete immediate healing. I was disappointed at the way the story was unfolding, but it didn’t rock my boat. That was the God I was acquainted with. The God of sustaining grace.

This radical walk into faith that He wants me to believe in this instance has felt counter-cultural. It is very specific to Liam’s journey, but it is shaping my heart in ways I know I will not fully comprehend until we’re far on the other side of it. All I can do is continue to listen and walk in obedience.

After I read those verses, I was praying in worship to God when I saw a vision of a hand coming down out of a cloud toward Liam’s leg. I was sitting on one bed. He was sitting on the bed to my left and the covers were bunched up around him so that I couldn’t actually see his leg. The hand was encased in gold, like the gold on the domes of capitol buildings and it had it’s index finger extended like a pointer. All I could see was the hand and wrist. The rest was in a cloud.

As it got closer I turned to look and the hand stopped and started to rise. I sensed that my job was to focus on God. It’s not my job to “have enough faith” to make this happen (that makes me God). I began to worship God again with my face turned straight ahead and out of the corner of my eye I saw the hand move down again. If I asked God to heal him the hand stopped or rose. I used every ounce of discipline to focus my mind on God and simply praise Him for who He is as our God and the hand moved down so that the fingertip was lower than the top edge of the blankets. I never saw if it touched his leg. I knew that if it did, he would be healed. It wasn’t mine to see.

I headed for the shower, worshiping and crying and as I did, I saw my mangled, black heart — misshapen by years of anxiety and fear. I repented and asked God to forgive me and make it clean. I expected it to turn white, but instead I saw it flesh out and turn rich red, pulsating with life giving warm, red blood. I remembered the verse David has reminded me of often. There is no fear in love. Perfect love casts out fear. The opposite of fear is not being fearless, it is living in love.

That night I woke multiple times with nightmares. The most vivid one I was standing on the deck of a boat and the wind battered my body until I flipped over the rail, my hands still clinging desperately to the handrail above and behind me. It was the first I realized that satan was after me in this story, too.

That afternoon we went to the Empire State Building to watch the sunset and the city lights to come on. It was so freezing cold, and so incredibly beautiful.

We tried to cram in as much normal life as we possibly could. Living with cancer shifts your life incredibly. Living with cancer and covid both is particularly difficult. While kids with cancer don’t seem to struggle life threatningly with Covid from reports our nurses and oncologist have shared, the hypervigilant screening and rules makes it imperative that our family not catch anything. Any respiratory symptoms could mean I can’t be with Liam in the hospital or that his treatment gets delayed.

Our social life has taken a phenomeal hit. It’s hard on all of us, but especially so on Adam. Staying at home isn’t exactly the way you envision spending the year you turn sixteen. We’ve tried to create as many opportunities for him as possible, but it’s often not an option. Liam had a three week break during the time we were getting surgical consults. He should have been having surgery; but our insurance was so inept it was almost impossible to get out of network coverage.

In retrospect, he should probably have gone directly into cycle 3 instead of having a break. But in all of these things, David and I have chosen to firmly believe that God was doing a work through the delay. That in Liam’s body it would create greater kill, not lesser.

God was so gracious and gave us glorious, warm fall weather. He was often outside in short sleeves and sometimes barefoot. It doesn’t feel like you get much vitamin D in November in Virginia, but you certainly get more outside than inside. It was a huge gift. Better air quality. Immune building. Exercise.

On Thursday we took him in for cisplatin and doxorubicin again. It is a wicked combination and something I will always wish could be forgotten, but I know it won’t.

The dread. Prehydration. IV emend. IV zofran. IV benadryl. Periferal IV and BAD (benadryl / ativan / dexamethasone) drip started. Doxorubicin for fifteen minutes. Red koolade like poison snaking into his veins for fifteen minutes. Four hours of kidney protective mannitol. Four hours of evil cisplatin. Hours of hydration and vomiting only to start the same process again on Friday. And then continued hydration and IV meds until he can swallow pills and keep food down so we don’t risk coming back in through the ER.

I hope it’s far more lethal to his cancer cells than his heart, hearing, and kidneys.

By now I know what to pack. I’ve quit taking school work along except to do a math lesson in clinic before it starts and often a spelling test. And then I know he’s going to hunker down and not want to do anything / not respond much to anyone until it’s over. He tries so hard to be polite but there is no zip in him until it’s over. As soon as his smile returns I know we’re out of the woods.

The diffuser is a MUST to mask the smell of hospital. His association nausea is so strong he can throw up from that alone.

Saturday evening when he was feeling better I was sitting beside him in the bed as he played Word Feud on his iPad. I was scouring the internet like usual when I stumbled across an article from a few years ago about how Dr. Prince had used an external fixator to regrow bone in in patients with osteosarcoma. “Look!” I squealed to Liam. He read with me. Patients regrew their one bone and had no physical limitations on weight or running as far as the bone was concerned. I realized Dr. Prince was a colleague of Dr. Healey, the surgeon we were scheduled to see the following week.

This time he got discharged on Sunday afternoon which felt like a miracle! One and half glorious days at home! Except not really at home. Monday we had to go back to clinic. Liam was feeling so awful from the delayed nausea from cisplatin that he vomited as soon as she flushed his port. He had to get a neulasta shot to help his cell counts.

The neulasta always makes his bones ache.

We do lots of baths to help support his body when he’s home. 4-5 x a week minimum and sometimes every day. I add 2 cups of epsom salt, 1 cup of baking soda, 6-8 drops of lavender and 6-8 drops of zendocrine. Some people choose rosemary and juniper. They always seem to help him feel better whether it’s nausea, achiness, or extra tired.

Blessed be the Lord, my rock, who trains my hands for war, and my fingers for battle; ….. he is my steadfast love and my fortress, my stronghold and my deliverer, my shield, and he in whom I take refuge. Psalm 144:1-2, Psalm 145:14-19

Liam’s conception keeps coming back to me over and over. It always felt as though God had called him for a specific purpose in His kingdom, just as He had asked me to call him into existence at a specific time.

Now this? Why? This feels like thwart, not the purpose. I feel confused.

I resonated so much with the women in the Bible who prayed and prayed and prayed and prayed for a child. Hannah. Sarah.

This morning God reminded me that Sarah also tried to figure it out. She even took it into her own hands to make the promise work. It’s my job to live with the not knowing. To know he is called and to live in the middle of the story where it looks impossible. It’s my job to believe Him. More than faith in the miracle, I need a whole-hearted belief in God.

The next morning I was combing my hair, the heaviness like a leaden shroud around my body. The words, “Light, light, light up the sky ……..open my eyes …” kept coming to me. I’m not my boys. Half the songs I love I can’t sing the words to or remember the titles for so I have to google the words I remember. I knew God was speaking to me.

I looked it up and listened to the song, “Light up the Sky,” by the Afters.
“Open my eyes ….. Show me You are with me.” I cried and played it again.

The words fit my heart so perfectly. So many times we pray that God would be with us; but the truth is He always is. We need to pray that He would open our eyes so we can see Him.

After the second time I clicked on a mix channel of the song expecting it to play first since that was the song listed. Instead, “Famous For,” …… the song God gave me for Liam with so much promise of miraculous healing …. started playing. My heart nearly leaped out of my body!!! So many times God brings me those songs when I’m struggling hardest to believe. As long as He continues to bring me messages of a miracle, I will continue in faith that He will do one for Liam.

We drove home that day, picked up our girls, and put things away from the trip. Life felt kind of surreal, the way you move around like a dream you wish you could wake out of. That evening one of Adam’s friends from church sent me this beautiful song. I still cry at the hope and beauty of these words as God gently led my heart back to quiet rest and faith in what He had said.

“While I wait. I will trust. Sometimes miracles take time.”

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 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.

10.31.20 Yesterday was filled with so much good news!!! We got an appointment scheduled at CHOP for next Friday!!! I called MSK and the codes went through at 3:29!! She said she would call on Monday with an appointment slot.

And then! Our oncologist called with results of the MRI! She said the tumor definitely has necrotic looking areas — it looks moth eaten instead of homogeneously solid. Also, osteosarcoma doesn’t always shrink, but Liam’s shrank from 20 cm at diagnosis to 16.2 cm!!

I’m so excited about this because it will make surgery easier. There is still no distal hip or knee involvement and no skip lesions. Please God let it stay that way!

As for the lung nodules, one disappeared, one stayed stable, and one new one appeared. They obsessed over it for a long time and feel fairly certain it’s not osteo. None of them are big enough to biopsy and they are thought to simply be inflammation. They aren’t calcified. They don’t look like osteo. You would expect the stable one to have shrunk if it was osteo or grown if it was chemo resistant and you would not expect a new one to grow while on chemo. There’s really nothing to do but watch and pray.

But for now, we’ll celebrate and praise for the wonderful news!

Then our mouth was filled with laughter and our tongue with shouts of joy; then they said among the nations, “The Lord has done great things for them.” the Lord has done great things for us; we are glad. Those who sow in tears shall reap with shouts of joy! Psalm 126:2-3,5

Liam had his scans yesterday. Everyone in the cancer groups talks about the scanxiety. Instead I walked in with supernatural peace and as we neared the hospital doors I felt underlying twinges of joy.

Expectant hope? I’m not sure how to describe it. It felt as though we were about to reveal what God has done for us and giving thanks for what I sense before tangible results.

I’m suddenly realizing that something has shifted drastically inside of me — it’s been transforming slowly for years, but not until this diagnosis has it become clear. I used to read verses of blessing and not really believe them for me. I tried so hard to believe them with my head, but after growing up in so much trauma and loss, my heart didn’t believe it.

I was afraid that God was another manipulative, mind game player who lured you in so that he could beat you from behind. I hated that I thought of him like that, but my brain was programmed for years.

This is the first time I’ve processed something as deep loss / grief that translated immediately into a faith in a God that wants to bless {his children} me.

I wish so much I could see what God sees. Both what He is doing through Liam’s diagnosis, but also on a smaller scale, is He pleased with me?

I don’t know how to write this next part. I always dislike when people give vague details and then add a disclaimer saying they just can’t say everything. Because why did they say anything at all?

I think that to understand this story in it’s fullness would require sharing significant detail and for some reason I feel a check. Whether that check is grounded from God or from hesitancy of my own, I don’t know. But until I feel sure that God wants it shared, I feel a kinship with Mary when it says, “Mary treasured all these things, and pondered them in her heart.” I hope that someday, like Mary, the whole story will be written and bring such glory to God and hope to people who live in darkness.

During Liam’s methotrexate admission the middle of October he and David met a couple in the hallway who stopped and asked if they could pray for him. He said he’d seen Liam earlier and told his wife, “If I see that boy again I’m going to pray for him.” They weren’t even on our unit, just on our floor. With Covid restrictions, you have no idea how rare it is to run into someone twice. But they did. And he prayed for Liam.

The following week I was in for the first part of the methotrexate admission. I wished I’d meet them, but I knew those chances were slim to none.

That admission as it neared the time Liam would typically be discharged he was just off. His blood pressure dropped into the 70’s that night and we had to really rouse him to get it to come back up to a safe zone. He wasn’t hungry. He was shaking a lot. Finally we went walking and and ran into the same people. What happened next was an encounter with people who believe deeply in the Lord and the power of the Holy Spirit. It reminded me again of what David said, “God will bring those people to you.” I felt more certain than ever that Liam would be healed.

The battle with darkness was FIERCE that week. I’ve never sensed such demonic forces as I have with Liam’s cancer. What happened in those weeks felt like another reminder from God that He has a very distinct purpose for him and satan is determined to destroy it. The darkness of it all felt so dark. But I also sensed a far greater power at work to overcome the darkness.

We just completed week 10 of Liam’s chemo schedule (technically eleven because he was delayed one week) and I still don’t understand exactly what is a round and what is a cycle and why sometimes they talk about weeks and other people talk about days.

It’s so bizarre the way this all has begun to take on a semblance of normal … in spite of my horror at calling this “normal.” But it’s true. The kids don’t cry as much when I leave. I’ve gotten somewhat used to packing for our getaways (although I still almost always forget something … this time Liam’s pillow and club crackers). Some days it feels as though our life has been like this for as long as I can remember. And then I think back and realize that he was diagnosed less than three months ago.

There are perks to the familiarity besides the less jerky movement of routine. We know so many of the nurses and are starting to know some of the residents and interns. Instead of repeatedly seeing new faces, it’s like seeing old friends. Liam lights up when nurses he’s grown to know and love pop into his room to chat … or set him up with saline flushes and tell him to call his nurse so he can squirt them when they don’t suspect it!

Last night after getting his nurse they paged the resident and told him I had a question. It took him forever to look up the answer to the question I made up, but eventually he arrived within Liam’s firing range. It was all fun and games and laughter for a few minutes. About that time the resident said the deal is Liam has to play for him since he got him wet. Liam shook his head and said deal. He played the song he’s been writing since his second methotrexate admission …. the first and only song so far that speaks about his battle with cancer.

Immediately the tone of the room changed. “the enemy’s approaching fast, a darkness coming near …………………. this is our battle cry, we will stand in the light, we will fight against all darkness, til the darkness turns to light.”

I cry every time he sings it. Those moments with five doctors and nurses crowded into our room embodied so much of Liam in this slice of life. Funny, full of fun and laughter, the kind of kid everyone wants to hang out with, making friends everywhere he goes, incredibly gifted with music …… and fighting off a cancer that wants to eat him alive.

Sometimes the easiest way for me to pray for Liam is to simply pray scripture over him. Today I pray this blessing over Liam.

“For you have delivered my soul from death, my eyes from tears, my feet from stumbling; I will walk before the LORD in the land of the living. Psalm 116:8