Chesed

We crawled back in the car for the second round of doxorubicin and cisplatin. This is the same, brutal chemotherapy combination he got on his first admission.

I couldn’t make myself go to bed until after 1:00 last night. My body just refused. I think it subconsciously thinks if I don’t go to bed the next day won’t come. But it always does. And now I’m exhausted to boot.

Over and over, God ministers to me through music. The repeat songs are “Famous For,” by Tauren Wells, “Peace be Still,” by Hope Darst, and the rest change as He brings a particular song for that day.

We weren’t even a mile down the road when I heard “Truth I’m Standing On,” by Leanna Crawford for the first time. I felt so seen. So heard. And without saying a word, my spirit had courage to drive on in. Right on in to the garage with so many floors. Massive concrete berms hemming us in.

To call in to central registration and answer all the covid screening questions for what feels like the 976th time. To wait in the car until they call. To walk in with Liam. To smile widely at the receptionist who always looks for us and asks Liam how he’s doing and if he had fun while he was gone. To wait in the chairs and start a Math lesson. To smile at the oncology nurse and say we’re doing great. To watch him hobble to get his height and weight, then sit to get his vital signs. To walk beside his leaping crutches to the room. To watch him get his port accessed, make happy small talk about the highs of the past week, watch them draw labs. To wait on results. To watch him nearly vomit because of the nasty taste in his mouth when they flush his port with saline, then watch and listen as they start his IV prehydration. To feel my heart leap as our oncologist walks in. She is the antithesis of what everyone seems to say about oncologists and we love her so much she’s nearly part of our family. To wait and wait and wait and wait on a room. To finish the Math lesson and do an oral Spelling test. To hear labs look great and we’ve got a room.

Sometimes you simply have to do the next thing whether or not you have courage. But it’s really nice to feel the courage.

Today God gave us gifts. For the first time since our first admission we got admitted to 7C and had Tracy for our nurse! They’ve all been lovely; but Tracy and Angie walked us through that first admission of horror and they will always be our closest bond because of it.

14. September. Monday.

Someone messaged me on Instagram and said she doesn’t know why, but David and I were impressed on her mind so strongly when she read these verses.

After forty days of deprivation and temptation in the wilderness, Jesus returned home. Luke tells us that after an immense time of testing and isolation Jesus made his way home to Galilee, “filled with the power of the spirit.” Up until that time, Jesus had just been an ordinary member of the small community of about two hundred people in the village of Nazareth. However, he was beginning to gain a great reputation throughout the whole district as news about him spread throughout the countryside. Luke 4:14

I would have liked to think that our deprivation was about over, but I had a hunch it was about to begin.

That afternoon I called UPENN about getting to see a particular surgeon there. It was a no go because of insurance, but they said she also has practicing privileges at CHOP. When I called them, they said no we can’t do it. “Ok, then put us down as self pay I said.” We can’t do that because you have it. It’s against hospital policy.”

COMPLETE BRICK WALL.

15. September. Tuesday

Today I am not okay. I can’t stop crying.

16. September. Wednesday

Steadfast love and faithfulness meet, righteousness and peace kiss each other. Faithfulness springs up from the ground and righteousness looks down from the sky. Yes, the Lord will give what is good, and our land will yield its increase. Righteousness will go before him and make his footsteps a way. Psalm 85:10-13

Steadfast love — my word for 2020
Faithfulness — What God is asking of me now
meeting together to form righteousness.
Oh, God, please give what is good.

17. September. Thursday

So many prayers answered. Liam’s liver enzymes are still so high, but they’re less than ten times normal so we can proceed with methotrexate. His oncologist thinks it was just time. I think it’s time plus detox baths plus organic food plus stopping all supplements metabolized by the liver plus tons of parsley and cilantro plus prayer.

18. September. Friday

Liam got his methotrexate, but as expected, his liver enzymes skyrocketed again. He’s feeling so rough.

19. September. Saturday

I talked to someone who helps with alternative treatments. I thought I was getting a metro map of how to metabolically starve osteosarcoma and instead she believes you kill cancer by only using super high doses of THC. I got a very bad gut feeling and even while we were still on the phone I heard God calling me back to himself.

Over and over he calls me back from going after “experts” and draws me back to pursuing Him as healer. It’s so hard for me.

I fully believe that God has given us minds to think and reason and He is glorified in that. But in this particular case, I keep hearing him asking me to pray for a miracle. To trust him.

When I’m most at peace, I feel he is going to do something miraculous, yet my mind keeps being drawn toward researching everything possible. Many times I feel peace even in that, but as soon as I cross the line toward making the research key, He stops me in my tracks. I can’t help but remember how much it feels as though so much of Liam’s battle is spiritual. Oh how I long for people to gather with us in prayer against that darkness.

But you, O Lord, are a God merciful and gracious, slow to anger, and abounding in steadfast love and faithfulness.
Turn to me and be gracious to me, give your stregnth to your servant, and save the son of your maidservant,
Show me signs of your favor, that those who hate me may see and be put to shame because you, Lord, have helped me and comforted me. Psalm 86:1-7

From the first day, I wondered how we would tell Liam about surgery. How do you look at a child and tell him he might never run again? How do you explain the options when all three of them are horrible compared to life as he knew it several months ago? When do you break the silence and explain that this surgery isn’t like most people’s surgery where you get cut open and zipped back shut and your body heals and there’s just a scar left to tell?

There’s not much time with osteosarcoma. You don’t get months to choose and make decisions and think through options. You get ten weeks of chemo and then a surgery that radically changes your life forever and then you get chemo for much longer.

Everything is so fast and so intense.

Turns out it’s a lot like teaching your kids about sex and birthing babies and other subjects we sometimes get squeamish about as parents. You give them what they’re ready for on their time table. God was so, so gracious to us and let us meet an osteosarcoma warrior who had limb salvage surgery and did miraculously well. Liam was taken aback by the size of her scar, but at that point he had no idea what the other options were.

And then the day came. “So what do they really do in surgery?” And just like that I knew it was time.

He was ready. I guess. When are you ever ready to hear about limb salvage surgery, rotationplasty, or amputation? Never. For sure not if you’re a twelve year old boy who lives and breathes movement, sports, adventure, and music. Name the sport and he played it. Almost. He loves ice hockey, skiing, swimming, baseball, football, ultimate frisbee, basketball, and soccer. He’s the kid who used to run a mile when he was six in the middle of the day during the hottest part of the summer, just because it was so much fun to run.

When do you ever get ready for this?

never

It’s a word that comes to my mind a lot the last while. Fierce. I feel fierce when I fight for Liam. Not fierce in an I will attack you way, but fierce as in an undeterred strength.

Talking on the phone is very triggering for me and I only do it very occasionally with a few people close to me. I use voice apps all the time, but an actual phone call? I do anything to get out of it.

Now I have to make phone calls a lot. To the doctors. To the insurance company. With home health. Some of them are easy, but the ones with insurance take a tenacious advocating that sets my blood on fire. They make me fierce.

I feel fierceness rising up inside when I advocate for what Liam needs in the hospital. 90% of the time they are the ones suggesting things to us. But in that other ten percent when I know what he needs … I don’t back down. July is the worst time to get hospitalized in a university hospital because that’s when the fresh out of med school interns start. Some of them come in knowing their limitations; but many of them come in cocky, full of head knowledge, and so proud of their accomplishments. It takes them a few months to learn that the nurses who have been working there for years know way more than they do about the hands on aspects in that particular field until they’ve got a few months under their belts at minimum … and sometimes mamas of kids do, too.

Liam was diagnosed July 29th.

Thankfully our oncologist doesn’t give them too much leeway, but we had a few opportunities to practice speaking up for what we needed and not stopping until we got it. Fierce.

I feel fierce when I stand up and pray aloud for Liam, fighting against the powers of darkness that sometimes want to swallow us whole.

It’s the beginning of another oppresive week.

Monday morning Harrison brought me a spider and sure enough, there were two little fang marks on his wrist. Adam looked it up and we decided it was a wolf spider so usually not toxic. I put bentonite clay on it and thankfully it’s healing nicely. In the afternoon I ran to Walmart for two things and as I was waiting for a parking space not one but two cars kept backing out as though I’m not even there. One had me blocked in as the other is backing into the side of me. I had to lay on the horn three times and even so the one car barely stopped before crashing into me.

That night Bella fell off the porch and hurt her ankle. She was still not weight bearing Tuesday morning so I took her to the doctor. Liam has gotten progressively more nauseous since yesterday and vomited this morning and I’m having a hard time getting him back on track. Just as I thought I was getting things settled this morning, I fell on the steps (I’m fine. It just hurt for a bit.).

The week prior when I was taking Zara to the doctor I nearly got rear ended. The car behind me literally swerved out into the oncoming traffic to avoid hitting us. It feels as though satan is unhappy with us and just lashing out in every which way. First it was stuff going wrong with the house and van, now it’s the rest of us.

One night I was sitting on the porch when I felt compelled to walk over to the bench with the “offensive” pillow and pray out loud against the darkness. I started to pray and Mia went absolutely crazy. Harrison was squirming and fussing. This was no way to do battle. I went inside and asked Adam to lock up Mia and handed Harrison off to David before going back outside.

The darkness was almost palpable. I prayed and prayed and prayed and prayed until I sensed it breaking. I don’t really know how to describe what happened next. I felt the presence of God, but Liam felt “far away,” as though I could break the power of darkness that was attacking us, but whatever was after him was too strong for me.

It was sometime that week that the craziness stopped. There were no more near accidents with cars or people. David managed to get the air conditioner fixed after blowing up one part and ordering another. He saved us hundreds of dollars by doing it himself.

On Thursday Liam went to clinic in preparation for chemo. Labs got drawn and fluids were getting pushed at maximum speed for pre-hydration when it all ground to a halt. His liver enzymes were through the roof.

Crazy how much we long to be at home and now suddenly we were so disappointed. It is so much work to arrange child care, get us all packed up and out the door, but far more significantly, a delay in chemo feels like it’s giving the cells a chance to mutate and grow stronger.

In spite of the initial devastation, David and I both felt sure that God was completely in control of this one. That somehow He was working this one for Liam’s good, not harm. And no matter what, we would praise Him and enjoy the gift of a weekend at home. Together.

It’s impossible to describe what it’s like to be a cancer mom. But maybe if you try to imagine packing for a stay in multiple directions for your family almost every weekend on top of having a sick child you might get started. Some weeks we are home for three days before being readmitted. Especially if you add in as much emotional stress as you can and then have your children be shuffled to different places plus sense that something very difficult is up and have them act out those emotions when they are home safe with you for a few days. Add some huge, huge, huge question marks and fears about the future and you will get a little closer. It really stinks being a cancer mom because of what it means for my child. For our family.

And yet, it is a huge honor to be a cancer mom. I watch Liam fight a fearsome battle that knocks the breath out of adults, and I watch him do it so well. I don’t know whether to cry or to applaud him some days; but I’m so proud of him. He is courage in person form. Suffering and suffering and suffering without ever complaining. He may be my child, but in some ways, I look up to him.

It’s September. It’s hard to know what day of the week it is, much less what month. It’s so cold in the hospital that I feel as though we moved straight from July and swimming and peaches to the dead of winter. When I walk outside into heat and sunshine I always feel a bit shocked.

I hope the weeks don’t continue escalating at the rate they have been because I feel completely winded.

On Monday Liam looked off. I checked his temperature and sure enough he was running a slight fever. Everything in the house was completely chaotic. My mom was here to help with school, but the house was a wreck and the three little ones were so disrupted. About that time I got a phone call from David that the dental office is trying to reach me because they have an earlier opening for Zara.

I raced to get us out the door, so relieved that she could eliminate at least one hour of NPO time. I felt so badly that she didn’t have a first thing in the morning appointment, but they’d squeezed us in over lunch time because of Liam. While I was taking her in I called Liam’s oncologist who said he really needed to come in to clinic prepared to stay.

She was afraid if I waited until I got home with Zara clinic would be closed and he’d have to go in through the ER so David left work early and took him in.

Zara was an absolute trooper and did so well with anesthesia and the dental work. I was so, so, SO grateful to God!

Meanwhile, Liam got admitted for neutropenia suspected to be due to mucositis. David spent the night with him so I could be with Zara. We brought him home on Wednesday … less than 24 hours before he was readmitted for chemo again. But oh, it was so good to be home!

This week has been a beast.

On Sunday Liam threw up again. Delayed nausea from Cisplatin is so mean. You think you’re finished with chemo, but the nausea keeps sneaking back and biting you just when you think you’ve finally recovered.

Two of my dearest friends came to see me that morning. We sat on the porch to avoid any possibility of germ transfer. Liam wasn’t able to get insurance approval for neulasta and his chemo knocked his white counts so low. It was an incredible gift to sit and talk with them for a few hours. They listened and listened and listened allowing me space to be exactly where I was emotionally.

It’s hard to describe how much it means when people show up with presence. Sometimes that presence is physical. Sometimes it means texting every few days or every week in ways that don’t demand response but invite it if it’s wanted. Sometimes it means tangible gifts shipped or delivered. When you’re going through this kind of hurricane, you don’t always have time or brain cells to respond, but if no one lets you know they are thinking of you, you quickly begin to feel all alone and forgotten. Crisis is almost unbearably isolating. You feel so alone because no one else really understands what it’s like to be where you are and you rarely have time to explain it. And with aggressive cancers, it quickly becomes that way physically because you are either in treatment or recovering. We will forever be so grateful to God for the people who showed up for us, literally holding up our arms and giving us strength to keep going.

On Monday I took Zara for a dental consult. On Thursday Liam had to be back in clinic for a visit and to see PT for the hip pain he’d developed from being on crutches. I raced home and met my mom partway home to trade Liam for Zara and raced back in to town for her physical for preop. Mom barely got home in time to drop off Liam and take Adam to drivers ed.

Basically, life makes your head spin.

But on Wednesday, Courtney came. It was SO GOOD to see someone who had survived osteosarcoma and survived it well! The kids all fell in love with her so much they begged her to come back! Liam was taken aback at the size of her scar, but I was so thankful for him to get a picture of what things would look like for him.

When she prayed for him and anointed him, I knew she was part of our warfare. She prayed with an authority I am only beginning to learn about. Prayer feels like something I will spend a lifetime learning. How to pray with faith. How our belief (or lack of it) in God and our perception of Him influences our prayers. The way we are sometimes prompted to pray a certain thing by the Spirit. Last summer when I struggled so hard with Harrison’s neck issues, dietary challenges, and developmental delays, I felt we should be anointed. We experienced some healing, but far from complete healing. I struggled a lot as I processed that time, but over and over I heard God saying, “You are stronger than you think you are. You can do this.” I felt as though I was to pray for strength to endure and accept. Now, with Liam, I felt as though to be in obedience to the voice of God, I was to pray for complete and miraculous healing and I was supposed to fully believe that it would come to pass.

I don’t at all profess to understand the nuances of prayer or what it looks like for others. I only know that I am called to walk in obedience and keep learning.

Blessed be the Lord, who daily bears us up;
God is our salvation.
Our God is a God of salvation,
and to God, the Lord, belong deliverances from death. Psalm 68:19-20

I can’t think of titles for these posts. My brain has paragraphs and paragraphs going through it that are full of emotion and words upon words. But when I try to write them, the sentences become cryptic. Stark. Void of emotion. Almost like bullet points.

This is a lot what life feels like right now. There is a tsunami of emotions and happenings and feelings and truths circulating in my brain at any given moment, but there is no time to process them. I simply have to move to do the next thing. And so they accumulate into muscle tension. I wake up some mornings with jaw pain because I’ve been clenching my teeth so hard at night without being able to mentally remind myself to relax my jaw.

There is no time. We are still a homeschooling family of seven. We were BUSY before. So much laundry and cooking and childcare and school and all the things that go with having a home and a family. This doesn’t make any of that go away. It just collides into it. My mom has been coming once or twice a week to help do school with Zara. My sister in law helps me clean when I can’t get it done myself. Friends bring meals when we are in the hospital. But my life is an absolute race track much of the time and the mental load is not one anyone else can carry. There are so many things to remember and take care of.

Osteosarcoma is ugly, aggressive, and unpredictable. Unlike many cancers where they can give you a prognosis based on staging, osteo is a wild card. You hear things like good chemo response, percent necrosis of tumor (percentage of cells that died during chemo) determined after surgery, clean margins (are they sure they got enough healthy tissue around the tumor so as not to leave any cancer cells behind), but they don’t tell you much. There are people with 90% necrosis who relapse before they ever finish MAP (the standard chemo protocol) and people with 30% necrosis who go on to become NED (no evidence of disease).

It feels as though it is completely in God’s hands. A wild card if you will. And so, we are interceding for a miracle. Because of the vision I had and the intensity of the spiritual battle I sensed in so many ways, I told David I need a spiritual warfare person. This isn’t just a physical battle with cancer for Liam. This is a spiritual battle where satan is trying to thwart his life because of the calling God has placed on him.

David held me and listened as I scrambled to think of someone who knows what it is to do spiritual warfare. “I think God will bring the person to you. Remember how Peter had the vision and the man from Macedonia came? I think the person will come.”

That very afternoon the girl who survived osteosarcoma and has had a miraculous healing called me. Our nurse told us about her and asked if we’d be okay talking with her. Of course I said yes. As Courtney and I talked, she said, “I’d like to come see you if you are okay with that. I’d like to pray for Liam and to anoint him with oil.” I had goosebumps.

David was right. We have found so much strength in recognizing the ways our giftings complement each other. When I contacted Ann Graham from Make it Better, a non profit for osteosarcoma, she said, “I find that in marriages one person is the researcher and one is the hand holder.” It’s given us words for the way we respond to the situation mentally and emotionally. And even though it doesn’t apply spiritually, I think it helped us realize how to find words to describe the way we gift each other there, too.

Except in periods of darkness and depression, I have often heard so clearly from God in ways I didn’t even like to tell other people. I grew up culturally believing that we mostly discern through the Bible and there isn’t as much teaching about the role of women as there could be. So for me, as a woman, to hear from God so plainly through the Holy Spirit … I doubted that it would be accepted and frankly I doubted myself. But as the years went by and I recognized His voice and leading so much more clearly, I knew it was Him.

It is a gift and one that David wishes for sometimes. But he has a gifting of faithfulness and perspective that I long for. When God goes silent, I struggle so hard. Our period of infertility before Liam nearly crushed my soul while David calmly believed in faith that we would have a baby someday. Now again, when I sense what God is saying, He brings so much perspective about how God might carry that out while I start thinking about how I should make it work; and what he says often comes to pass.

Our opposite giftings are enormous strengths to us as a team. But anyone who has been in a relationship, knows that in periods of stress, it’s so easy to see our differences as wrong and hurtful. David and I talked about the way grief so often destroys marriages. We were not only looking at grief and loss, we were going to be so terribly, terribly busy and apart from each other so very much of the time. It’s one more thing to talk to God about.

Life has turned into a blur.

Liam was still so ill on Monday. He couldn’t keep anything down in spite of all the meds. David traded out with me for the day so I could be with the kids at home and I realized the air conditioner had gone out.

We started looking for a repairman for the air conditioner. It was so much easier for me to be at home to feed Harrison. I couldn’t believe the baby who had gone from 98% breastfed was down to four times a day in two weeks. But it was not easier in so many ways. The little ones could not get over their emotional distress from me being gone. Harrison would hear me say “I’m going to go start a load of laundry,” from across the room, latch onto the word go, and erupt into loud crying as he clung desperately to me. The girls were so weepy and clingy. We hardly ever, ever got a babysitter even for an evening. This was so shocking to their normal.

Tuesday I went back in and finally on Wednesday Liam made a rapid turn around. Before we got discharged his nurse and I gave him a bed bath. He was so weak I knew it would be impossible for him to solo bathe at home and I wanted to get the blood out of his hair where there were better supplies. He smelled like dried blood, chemo, and sickness. He struggled so hard with the loss of independence. His nurse was a believer and she reminded him of how Mary Magdalene washed Jesus feet. It is a hard thing to be served, but it’s like Jesus, too.

Wednesday afternoon we loaded up and came home!! Oh, it was so good to be home! The trip home exhausted him.

Thursday was pretty rough. He was tired, a little sad, and I had to keep track of so many meds and remember to flush his port. Boy my nursing skills are rusty. But mostly, there’s something so odd about doing it to your own child.

On Friday we had to head back in to clinic for labs. He got his port deaccessed and had his first inhaled pantemadine. When the respiratory therapist walked in the room I thought he seemed familiar. I glanced at his nametag. Kerry. I was sure of it. “You used to work inpatient, right?”

“Oh, yes, but that was a long time ago,” he brushed it off with a wave of his hand.

“You worked in the CCU, too?”

This time he looked at me. “Yes, but how did you know?”

Because I did, too.

I cannot believe God keeps giving me little connections here.

Someone sent me this verse and said she’s praying it over Liam every day.

But for you who fear my name, the sun of righteousness shall rise with healing in its wings, you shall go out leaping like calves from the stall. Malachai 4:2

Liam was still vomiting from the first day when we started the second day. It’s a brutal schedule. Doxorubicin, which many call the red devil. It’s literally the color of red koolade and looks like something that would kill you as it snakes through your IV tubing.

After that it’s two hours of steroids to protect your kidneys and then four hours of cisplatin. Cisplatin is a heavy metal and can cause hearing loss. It felt like satan was hitting Liam in the places he is most gifted … athletically with a monster tumor in his leg that would never let him run the same way again and with a chemo regimen that could take his hearing from him. He plays keyboard by ear and is so incredibly talented. Cisplatin has a wicked delayed nausea effect that can last for up to a week. One of our oncologists said the delayed results seem to be more profound in teenagers.

We were just trying to survive the day. Liam was getting ativan, benadryl, zofran (switched to kytrell), dexamethasone, and compazine IV push for nausea and it wasn’t cutting it.

That night he got a dose of sodium thiosulfate to protect his hearing. I thought I knew horrible. This took horrible to the most intense level you can imagine. He woke out of a medicated sleep projectile vomiting and it wouldn’t let up for an hour. Oh, Jesus, have mercy!