Osteosarcoma
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.