Today just sailed. Until it didn’t. Liam and I were in the middle of a game of Scrabble and I was embarrassingly almost one hundred points behind. Suddenly he got antsy and just crumpled back into his pillow in exhaustion.
Mercifully he just slept for the next hour and a half until the chemo was done, but it was nausea, dizziness, belly pain, and exhaustion from then on. David stopped by again and we traded spots so I could nurse Harrison outside on the sidewalk. While David was upstairs, the nausea turned productive.
His poor body is screaming that it’s had enough and tomorrow we have to repeat the same regimen all over again. Oh, Jesus, please have mercy!
I met David in a parking lot and transferred Harrison to him. Thankfully, David’s office is only a few miles from the hospital. Our oncologist tried and tried to get special permission for me to take Harrison along in because he’s breastfeeding, but it was a dead end street. He went to work with David and would come to the hospital for milk breaks.
Liam and I headed to the OR. The port placement took forEVER. At least twice as long as they’d told me it would take. My friend, Jeannine was working so we ate lunch in the cafeteria together. I ran into my cousin, Dan three times. I couldn’t believe it. In a world of no visitors, God was still bringing me people.
When Liam was finally finished they let me into the PACU. He was in excruciating pain. They hadn’t warned us about that at all.
I saw so much blood caked in his hair at the back of his head and knew by the amount of time it took, they must have had a rough time. I’d asked for a double port and they said they couldn’t do it in someone his size. It made me sad, because I knew at a sarcoma center they would have given him one and he was sure to end up needing a lot more sticks with a single lumen.
When they had a room, we wheeled up to 7C and got the nicest, enormous room at the end of the hall. I naively assumed this would be normal for chemo admissions. Had I known what was to come in the future, I’d have been so much more appreciative.
waiting on Harrison to finish eating
Because it was so late in the day they decided to wait to do chemo until the following day. I was so relieved. Liam had so much pain. He couldn’t even straighten his head, likely from having it cranked strangely for hours on a cold OR table. We partied with salted cashews, watermelon, and a favorite hockey movie, “Miracle.”
The staff are so in love in love with him it’s almost funny. The resident was reporting to our oncologist and Dr. R finally said, “Ok, anything medical to share?” They keep telling him he’s so cute and you can just see the twelve year old well concealed annoyance at being called cute!
These moments feel so normal and yet almost sacred. I’m trying to live right here in this moment. Tomorrow is coming. And based on what has happened so far, so will grace.
August 13. Some days just feel so branded in my head. August 5. Biopsy. August 12. Biopsy results. It feels like another huge day because it is.
Liam, Harrison, and I headed in for his PET scan to see if the cancer had spread anywhere else. I was pretty sure I wasn’t supposed to be taking Harrison along because of Covid, but I didn’t ask. I just took him. It was the first time back with Liam on crutches.
I had a backpack, was pushing Harrison, and trying to help Liam navigate in and out of the car. We were running a little later than I wished and arrived at radiology in the nick of time only to be told this was supposed to be at radiology in the building across the street. Back out we went, across the street, and around the corner and down the elevator. By this time Liam was tired. He wasn’t allowed to eat anything prior and he was dreading drinking the contrast.
We arrived only to be told we needed to go to the cancer center. That’s when I gave up and asked for a wheelchair. Late or not, Liam had reached his limits. They were all so, so gracious and kind. We have been met with so much kindness from the parking garage to the people screening for Covid to every department we’ve encountered.
Liam went in for his scan and Harrison and I went outside to wander around and wait. David was planning to bring us lunch and head upstairs with us to meet our oncologist, hear the chemo plan, and meet the surgeon who would do the port placement.
Liam was back out, but David couldn’t find us or a place to park because the ladder racks on his truck were too high to fit in the regular garage. We didn’t know about the oversize garage so he parked several streets down and started walking with all the food. Meanwhile, we were running really late for our next appointment. The idea of lunch in the garden vanished and I carried a fussy Harrison while pushing Liam in the wheelchair while Liam balanced his crutches and tried to push the stroller in front of us back up the hill. We were many people’s free entertainment!
Thankfully David arrived soon and rescued us as he always does when we’re in trouble.
That night I had a dream. I saw cancer cells dying and new bone cells ossifying from the margins in. I don’t even know how I knew what they look like, but in my dream I knew that was what I was seeing. When I woke up, the phrase, “More than we can ask or think” was going through my head. I couldn’t figure out where that phrase was coming from and suddenly it hit me. It was from the song God gave me for Liam. “Famous For.” I got covered in goosebumps. God is this what you are asking me to pray for? This doesn’t happen in osteosarcoma.
My friend Jennie reached out to me as soon as she heard about Liam. She was one of my preceptors in the CCU and I loved her so much! She was smart and taught me to dig in and learn everything I could, how to build rapport with the doctors as a team, how to communicate what my patients needed and how to advocate for them instead of waiting around for it to happen.
Now she’s a nurse practitioner with a holistic bent far away in another state and my nursing career feels like a chapter in a history book; but once again we fall into similar roles. She sent me so much helpful information and helped me find a pediactric natropathic doctor who specializes in oncology patients. She listened to my heart …. the mom side and the nurse side and could understand and speak into both. But more than that, Jennie shares my faith in Jesus and she led me straight to him in both praise and speaking truth when I couldn’t make sense of the muddle I was feeling.
A friend from nursing school is now a pediatric oncology nurse in a different town and she became my source of all kinds of helpful information for avoiding side effects and which things to ask for.
I marveled all over again. This was all so orchestrated from God way back twenty plus years ago.
May they dwell in the shelter of the Most High and abide in the shadow of the Almighty. May the Lord be their refuge, their fortress, and the God in whom they trust. May the Lord command His angels concerning them to guard them in all their ways. May He answer them when they call and be with them in trouble. May the Lord rescue and honor them. With long life may He satisfy them and show them His salvation.
My sister, Christy, and her family arrived Sunday afternoon a few hours after Jonathan and Heather left. Steve spent a few hours with us that afternoon and we all went to the local Mexican restaurant for dinner before he turned around and headed back home. Christy and the boys stayed until Wednesday.
I loved having her there for a few days. We went walking that first afternoon. I usually spill words like hot lava, but somehow it’s gotten really hard to talk. The words bury themselves deep inside. There are too many of them and they’re all disorganized. Sometimes they don’t match what I feel in the moment and other times they’re too much for the person who is with me. And sometimes they simply hide, as though my body is trying to shield itself from the sorrow as though it didn’t exist. But when I walk, the words come tumbling out.
On Monday we switched the boys’ room and office so that Liam wouldn’t have to do the stairs anymore. Christy helped me choose curtains and blinds for the bare windows and found a small bookshelf and baskets for clothes at Target on her way back to Mom’s house. Liam and Adam both LOVED their new room! Adam was convinced he never wanted to move back upstairs. Liam wants his old room back when he can walk again. They moved from the brightest room in the house to the darkest. It’s great for sleeping!
Tuesday Mom and Beth came and the men joined us for supper. Everyone says it, but your priorities really do shift when you get a life-threatening diagnosis. There are a lot of things that become inconsequential people skyrocket to the top of the list.
The boys did so well at spending time with Liam. Normally they would all have been outside in ferocious tackle football games, but this time they played Bounce Off at the kitchen table. Stopping their activity didn’t stop their laughter! For most of the boys, this was only a brief interlude of solidarity. I could barely handle the pain in my chest thinking about how this could be forever for Liam.
The final results from the biopsy are in. There were no surprises diagnostically. It really is osteosarcoma. In the afternoon as Mom, Beth, and Christy were in the house working on things, I was outside on the phone with someone who was trying to be helpful. She gave me so much helpful information, but it also felt as though she hadn’t processed her own grief well and she gave me rich details of every single thing that had gone wrong and the many, many complications before her warrior died. It gave me a lot of information, but it was a hard, hard conversation and so much overload. During the conversation a butterfly landed on my leg. One of the kids ran past and scared him off, but he came right back. Four times he was frightened off by someone and only to come back to rest somewhere on my body. He was just a butterfly, but he felt like a messenger from heaven.
They call it denial; but really, it’s more like some type of disassociative horror. I go through my days, desperately reading everything I can get my hands on then turning around and refusing to open a single screen. I get in the elevator and wonder why it doesn’t take me to the lobby only to realize I never pushed the button.
How did this become our life? And did we actually ever know anything different? It feels like a lifetime ago.
Liam started struggling with a limp and some leg pain the first week in May. We could never remember exactly which day it started, only that it started one day before I got hit with a brutal case of vertigo that left me on the floor for several hours before I finally gave up and called someone to come help me because I still couldn’t get up and I had to nurse my baby. 24 hours they said. When it didn’t go away, they said, oh, a week. But a month later I was still clutching the handrail, trying not to fall while going down the steps.
Struggling to carry Harrison safely. Struggling to do anything at all. It took me all day to do a load or two of laundry and get dinner on the table.
Liam had pain in his knee and a peculiar limp, but because we couldn’t pinpoint a fall or specific time that he remembered it hurting from slipping, we chalked it up to his typical super athletic life. Now, in retrospect, we know that should have been our biggest clue. Pain and a limp NOT associated with a particular injury is the biggest sign of bone cancer. He had none of the typical cancer signs … bruising, fatigue, night sweats, loss of appetite, illness, none of the things you hear to watch out for. Now we know those things don’t usually happen with bone cancer. He is super adaptive and looking back I see soft signs. The way he quit wanting to play with Mia as much. The way he started sitting on the box drum to play keyboard instead of standing and bouncing. The generalized lethargy … I thought he was mildly depressed from Covid, lack of social life, and missing Adam at work. He did the same thing the summer before when Adam went to work and it made sense that he lost his zest even more with Covid and no church on Sunday and an aborted baseball season.
Oh, how hindsight is everything.
I kicked myself so hard for not seeing the signs. I was the mom who was told over and over by multiple practitioners that my kids were so lucky to have such an observant mom. With Harrison especially, I was told again and again that he was so fortunate. Most moms didn’t see these types of things until much later in development and they became so much harder to treat.
But now, when it mattered most, I completely missed it. I was so angry at myself. How could I have failed Liam so miserably? I knew the vertigo played into it tremendously because it wasn’t until I felt better that I woke up to what he was really like and took him to see his pediatrician. But even then, when she suggested physical therapy and briefly entertained the idea of an X ray I ran with the physical therapy idea. Neither of us suspected cancer and I didn’t want unnecessary radiation. And because of Covid, I didn’t notice that he wasn’t playing like himself …. that the pain was so significant. Because of Covid, I only went with him to his initial PT assessment. The therapist could tell which muscles were involved and said it was fairly common. Because siblings weren’t allowed into the waiting room and we rarely get sitters, I would go sit in the parking lot while Liam went in alone. Which meant I never got updates.
A few weeks later when Liam told me he got another therapist to look at him I waited until Liam was done and back in the van and then I went inside to talk to the therapist. Liam’s pain was gone, but the limp wasn’t. I’d asked him if it hurt and made him limp or if it was habit. He said it didn’t hurt so he was pretty sure it was habit and he could make himself walk without one if he focused. The therapist didn’t say much. He asked who his pediatrician is and said he wanted to talk to her. That’s when I knew something was off.
WHY??? Why did the vertigo have to happen simultaenously and blind me? Why did it have to happen during Covid and slow my realization? Why did his pain go away with therapy when his bone was literally almost eaten alive?????? Why was I so slow? Because now his tumor was absolutely enormous and it had been so, so long. We all know what happens with cancer after time.
David took me on a walk one day and said, “What do we need to do for you to be able to not blame yourself?” I don’t know how he knew what was roaring around in my head, except that he knows me pretty well after this many years. “You’re going to need to let it go. You can’t move forward or live in the moment that we have when you’re stuck there.” And when I gave all my reasons, he said, “They might have missed it if they would have Xrayed way early.”
It’s true. They couldn’t have missed it if we’d xrayed when we started therapy because we felt a soft, squishy lump by then that disappeared when we massaged it. After a few weeks when the therapist called the pediatrician, the lump had grown hard. But back when he first hurt? We might have missed it. There are plenty of osteo stories that were initially missed and his is so fast growing it’s definitely possible.
In the end, the thing that brought me the most release was realizing again that he’s more God’s than He is mine. God is writing His story. And David was right. I needed all my energy and focus to live in this moment and to fight for the future.
My mind kept going back to two things.
When we were talking to our counselor about our decision to move back to Virginia from camp he said, “Where do your boys need to be in 3-4 years?” At the time, those words felt significant only for their emotional, spiritual, and social connotations. But now they kept returning to me and I realized they were prophetic. We were exactly at 3 1/2 years and physically Liam needed to be here, close to a university hospital and with the kindest oncologist you could ever possibly meet.
The other was the words God kept impressing on me over and over and over during some incredibly dark days the summer prior as I struggled through postpartum depression coupled with Harrison’s challenges. “Praise precedes the miracle.” I don’t even know where it came from or why those words became such a mantra for me. But I felt God bringing them to me and telling me they were for this time …. praise would be part of Liam’s healing.
They boys have been dreaming of recording some of their music for months. Liam has written a few songs and they so much wanted to be able to start recording them.
With Liam’s diagnosis, I knew I wanted to do everything in my power to make it happen. One of the chemos used in osteosarcoma often causes hearing loss and Liam plays entirely by ear. It felt like so many losses on top of each other. Everything I read online was yet another sucker punch in the gut.
Jonathan & Heather dropped everything to come be with us …. the magnitude of this gift is likely one they’ll never fully comprehend. Jonathan brought his personally owned recording equipment and set up in our living room to record audio and video of the boys.
Heather and I loaded up all the rest of the kids and drove to Stuarts Draft to swim. Once again, it was cloudy and looking almost cool and rainy. We went anyway. In the middle of so much overwhelm, I was having strong intuitions from God about pressing forward in faith. This isn’t like me at all.
The closer we got to the pool, the sunnier it got. Trell was out cutting the grass and went inside a few minutes before we got there. “Michelle must be getting close. I’m going to have to change clothes. It’s getting hot and sunny out there.” We laughed when they told us …. but you would have to know how opposite this usually is. I am jokingly known as the rainmaker among my close friends. It can be predicted to be hot and sunny and if I come to swim or go on a vacation down south early in the spring, there will almost always be unexpected cool and rainy weather. This was literally God moving on our behalf … I didn’t doubt it for a second.
In the quiet house at home, the boys recorded three songs! (You can see their youtube channel here.)
We had so much fun at the pool and returned home to an amazing brisket David cooked on the grill. Cynthia sent potato salad home with us and Heather cut up a salad. The awfulness hung thick inside my brain, and at the same time I knew that we were surrounded by God and by friends. It’s possible to feel so much grief you wish your entire family would be transported to heaven and at the same time, talk and laugh and love with all your heart.
Liam had so much more pain on Thursday, the day after his biopsy, than what we were told to expect. His incision was only an inch long, but it was a deep bone biopsy and suddenly he had all that pain on top of the tumor pain.
Zara was sobbing. We’d tried to make secondary plans to go to Virginia Beach to see friends since we couldn’t do most of the things we’d been planning to do, but suddenly we couldn’t even do the secondary plans and her little heart was devastated with so much loss and disappointment.
We called our friends and said, “Could you come here?”
The boys really wanted to record some of their music and Jonathan had offered to bring his equipment and help them. We started realizing how desperately we longed for the gift of their presence. When hard things happen, a lot of people tend to cut a wide swath to give the hurting people space. Sometimes that’s good. But most times, people desperately need someone to show up.
With plans in place, I headed out to grab a few things on Friday. As I was driving out of Goodwill, Tauren Wells song, “Famous For,” came across the library. A few phrases broke through my completely distracted brain and I grabbed the knob to crank the volume as high as it could go. The car shook as the words reverberated through the van. I pulled into the Walmart parking lot, sat to listen as it ended, and immediately pulled it up on youtube to listen again and to send it to David.
This was my fight song for Liam.
Liam had pain all the time, but often when he would move, he would get sharp shooting pains. After we knew, he would quip, “Well, the cancer just took another bite.” I started picturing the cancer as a huge, devouring lion with a gaping mouth.
In the song, these phrases are back to back. “Shut the mouths of lions. Bring dry bones to life. Do what you are famous for. What you are famous for.”
That song would become my prayer for him over and over when I couldn’t formulate words on my own. Shut the mouths of lions. Bring dry bones to life.
“Famous For
There is no fear, ’cause I believe There is no doubt, ’cause I have seen Your faithfulness, my fortress, over and overI have a hope found in Your name I have a strength found in Your grace Your faithfulness, my fortress, over and overMake way through the waters Walk me through the fire Do what You are famous for What You are famous forShut the mouths of lions Bring dry bones to life and Do what You are famous for What You are famous forI believe in You God, I believe in YouRelease Your love inside of me Unleash Your power, for all to see Spirit, come, and fall on us Over and over, oh LordMake way through the waters Walk me through the fire Do what You are famous for What You are famous forShut the mouths of lions Bring dry bones to life and Do what You are famous for What You are famous forGod of exceedingly, God of abundantly More than we ask or think Lord, You will never fail Your name is powerful, Your word’s unstoppable All things are possible in YouGod of exceedingly, God of abundantly More than we ask or think Lord, You will never fail Your name is powerful, Your word’s unstoppable All things are possible in YouMake way through the waters Walk me through the fire Do what You are famous for What You are famous forShut the mouths of lions Bring dry bones to life and Do what You are famous for What You are famous forI believe in You I believe in YouThere is no fear ’cause I believe There is no doubt ’cause I have seen Your faithfulness, my fortress, over and over”
August 5. One of those dates likely branded in my brain forever. The day we thought we’d take our family camping beside the river, fish, canoe, cook over a campfire.
Instead David, Liam, Harrison, and I headed in toward the hospital. The girls stayed with my sister overnight and Adam opted to stay at home and work on a few things over going to someone’s house. Because of Covid, I couldn’t take Harrison along in to the OR waiting room. But because he was nursing, I couldn’t leave him at home. David sat in the van with him while Liam and I went to meet the surgeon. There is no pediatric oncology orthopedic surgeon on staff at UVA, but one with practicing privileges one day a week. He showed us the MRI and I simply sat there in shock, thinking, “I can’t breathe. I can’t breathe. I can’t breathe.” The tumor is enormous. Twenty centimeters ….so from his knee almost to his hip. What I didn’t realize is the gigantic amount of involvement outside of his bone on the inside of his leg and on the lateral side. I just had no idea. It was absolutely crushing to see.
We signed paper for the biopsy, went to Best Buy to get a laptop so both boys could do school while Liam was in the hospital, and headed back to the surgical waiting room. It was mean enough that Liam had to wait until after lunch for his biopsy (nothing to eat or drink after midnight), but on top of it, they had warned us to be ready to wait a long time because the OR schedule was packed.
I nursed Harrison, walked in with Liam while David went to do some work at the office where Harrison could nap, and registered. We were trying to find two seats to sit together (Covid, you know) and hadn’t even found a spot to sit when they called his name and took us upstairs. It felt as though God just opened up the Red Sea in front of us.
I looked at him in the bed, prepped, ready, warmed by a space suit looking blanket. How had this become his life? They wheeled him away and a nurse led me back toward the main hallway. The instant he was out of sight I started crying. She looked at me.
“Are you ok?”
I nodded, unable to speak. And in this world of Covid where doctors can no longer shake hands when they meet you she put her arm around me and asked, “May I pray with you?” I nodded again because my voice still didn’t work.
There, in that hallway as doctors and nurses walked past, she and I stood with Jesus and she prayed.
When the doctor called to say he was finished he said, “I’m not a pathologist and they don’t like when I say things ahead of them, but I’m going to tell you what I see. This looks like classic osteosarcoma.” When he heard how much pain Liam has he said, “He has to stop weight-bearing immediately. That much pain means the weight of his body could cause a stress fracture and then tumor cells would spill everywhere. And just that fast, Liam got relegated to crutches.
The collision of emotions and events is almost too much to explain. How is it possible to feel thrown into the worst kind of abyss and simultaneously feel so carried by grace? How is it possible to feel as though e.v.er.y.thing has gotten disrupted and in other moments shake your head at how many things are already in place?
The girls are struggling so hard with the disruption of our staycation. We’d all chosen one fun thing we wanted to do, but the truth is, we were all looking forward to all of it. Now our Monday work day felt off. We’re so painfully aware of Liam’s limp. He was in so much pain from swimming and basketball on Sunday. Activity always exacerbates the pain. The lump that had been soft and palpable has grown hard and almost visible.
Obviously we’re not hiking Humpback today. Liam is on the couch with advil on board. But everything is up in the air. Should we still go to Ravens Roost to watch the sunset? His biopsy is tomorrow. Will it hurt him to be out late at night? We’d already been planning to take family pictures during this staycation (that was my fun thing and no one else except the girls was looking forward to that one. Go figure.) There was a huge rainstorm last night so pictures are tonight. The night we should have been meeting my family for dinner at Ravens Roost instead of hiking. But now the bumped plan is getting bumped. Most times we try to get a few family pictures on our own or I’ll set up the tripod and have a friend come by to get the kids attention and click the shutter, but suddenly I realized I didn’t have time for a redo. We had one shot on this before chemo started and it was last minute. My friend, Jessica, graciously jumped in and took photos for us.
Suddenly you are so aware of living life fully without holdbacks, but you’ve also got someone sick to think about and how do you live fully in ways that don’t leave him unable to live fully the next day?
Zara cries so much about the losses of the week. It breaks my heart. The boys are so bummed, but the overarching loss is so great the smaller losses make sense. Zara and Bella know he has cancer in his leg and that he has to get sicker before he can get better, but none of it makes sense to them. They’re just watching their camping trip and hike and pontooning at the lake go up in smoke. Even though we knew it would get late, we met my family at Humpback Rocks to watch the sunset after our family pictures.
Harrison is blowing us all away. He had delays orally and physically. We saw physical therapy for months for generalized low muscle tone plus left sided weakness. He’d seen a neurologist and developmental pediatrician. No answers. Just more therapy. Because of his physical delays he was still 98% breastfed at seventeen months. He hadn’t gained weight in months, but every time we tried to feed him anything he gagged and vomited. Not only was he breastfeeding almost every hour and a half throughout the day, he was so intolerant to so many foods I was on an incredibly restricted diet.
The day after Liam’s Xray he had a speech therapy appointment. She evaluated him and Harrison sat there listening to us talk and taking it all in with that way he always has. I was sure he understood almost everything we were saying. Because of Liam’s diagnosis and how overwhelming life was about to get, she sent me home with suggestions, but no follow up visit unless I felt like he needed it.
We got home and Harrison started reaching for food and saying num num about everything in sight. I couldn’t believe it. The child who fought food was eating! God is literally paving the way before us.
