(one week before relapse)
I had trained myself so well not to panic that I didn't flinch when I saw a few light bruises on her last week. After all, she had massive bruises before and her counts had been fine. Most kids relapse the first year off treatment and Grace was well past that. We thought we had dodged the bullet, even though her aggressive form of PH+ leukemia has a 25% relapse rate (which sounds great on paper but it also means one in four kids relapse, which suddenly sounds not-so-great).
I was so encouraged by her oncology visit two weeks ago. Her blood work was perfect and when her oncologist told us, "It's time to move forward with your lives," I was entirely ready to leave the cancer world behind us. And that was a big step for me, to let go of my fears of relapse and to move forward with "normal" lives. I wanted that so desperately for our family.
Sunday night she woke up crying that her arm hurt. I gave her some Tylenol and took her to the ER. By then the pain had lessened and she told me she wanted to go home to sleep. So we did, but Chad and I were both deeply unsettled by it. Bone pain is one of the major symptoms of leukemia. In the morning she woke us up crying that her arm hurt, her stomach hurt, her foot hurt. We called the oncologist at Children's Hospital and they got us in that same morning. I packed an overnight bag, just in case.
When Chad arrived we told the kids. Grace first wanted to know if she would die, and then if her hair would fall out, and then if she could play with the new Legos her daddy brought. And in less than a minute she was settled with the news. Luke was similarly receptive.
It's been eerie how quickly we all fell back into the cancer lifestyle. At the hospital, surrounded by nurses and doctors and other families we know and love, it almost felt normal. Like an extension of her last cancer. It didn't really hit me until I went home Sunday night to spend time with Luke and sleep in my own bed...and Grace and Chad weren't there. That's when I knew it was real.
Even still, it's a fleeting knowledge because "cancer" is a term, not a tangible thing, and refuses to be understood as such. It's almost always like that. Talking to her oncologist about her chance of survival seemed subdued. Buying new headbands for her soon-to-be-bald head felt like a funeral. It's in the details that cancer becomes an understandable reality.
When I do grasp some little corner of understanding, it comes hard and fast in the most unexpected places and times. In Target today, buying decorations for Grace's hospital room, I was nearly knocked breathless. But before the emotions reached my face I had it back under control. Which is good, it's a coping mechanism necessary for cancer parents. Also it's bad because late at night when I try to unravel the knowledge of it, I can't. The emotions don't obey my will, they come when they want and it's almost always at a time when I can't let them.
In Celebrate Recovery and through therapy I had to learn how to cry again. I had become too good at controlling my emotions, the first time Grace had cancer, until I had deadened them completely. I've since learned that having emotions is an important part of being human. I am trying to balance that knowledge with the reality that I don't have time to feel every feeling because my life isn't just about me, it's also caring for my two highly stressed-out and suffering kids. So I know that there's time to feel sad but there's also a time to put on big-girl-undies and laugh in the face of fear. Which is also a critically important part of being a cancer parent.
Grace needs me to model both for her, so sometimes I let her see me cry and sometimes I make silly faces instead. And who's to say what is too much and what is too little? The CHLA therapist tells me I need to worry less if I'm doing it right, because there is no "right" in this situation.
There's nothing right about kids having cancer...but still goodness is here if we look for it, which is also a critically important coping mechanism necessary for cancer parents. I find it in the love of our friends and family, in the care of her medical team, in the love Chad and I have for our kids and they for us, and in the love of God. It's those moments of goodness we will hold onto when things get hard.
Anyhow...I have to get to bed. I rarely have alone time and at night when I stay up this late (10pm) we inevitably have a thousand wake ups. Goodnight friends.