I was holding my daughter’s hand—again—reaching down to her as she sat in the exam chair in the surgeon’s office—again. Chris, my husband, was there too, as he always is. And—again—the surgeon was not coming right back. Chris and I looked at each other. What we did not need to say out loud was that we already knew the surgeon would have bad news.
Each time the surgeon does not come right back, the news is bad. It had been so for a year and a half, and now, we told each other with our eyes, we knew what to expect. So we took turns holding Lucille’s hand, and we waited.
We know we aren’t the only family to sit in an exam room waiting for more bad news—though that isn’t what I was thinking while were sitting there. The truth is that even while were waiting, countless other families were sitting in their own limbo, waiting for doctors who shouldn’t have been taking so long.
I can’t say exactly what it’s like for everyone, but here is what it’s like for us.
Something Feels Wrong
Lucille was three months past her radical surgery, six months out of drug therapy, and two months into getting back to normal. Everything should have been fine. But it wasn’t. She started feeling pain in her jaw. The pain was intense enough to need Motrin and ice packs, and it was in her mandible—her lower jaw bone—right where the tumor had grown.
We let it go for a few days, telling our daughter and ourselves that everything should be fine. When we called her surgeon, he advised us to watch her for a few more days. She had been sick; maybe her jaw was sore from throwing up, or from crushed nerves healing enough to feel again, or from adult teeth coming in. After all, the pathology that came back after the surgery was perfect—no tumor cells anywhere. But after a few more days, he asked to see her—just to be on the safe side.
So Lucille had a CT scan as soon as we walked into the office. It was April again, and now we were waiting for the surgeon to look at a CT scan, just like we had one year ago, when the surgeon had come in and apologized for keeping us waiting before telling us the tumor had grown, and Lucille would need to start treatment with an oncologist.
Now, as the surgeon finally came back into the room, he said, “Sorry to keep you waiting. I wanted to take my time looking at the CT.”
So he had bad news for us again.
I wanted to drop the f-bomb but didn’t, not with Lucille sitting in the chair. In a minute, Lucille’s scan illuminated the screen. We could see something there, in her jaw, in the middle of the newly-grown bone.
The surgeon went over the options: It could be nothing, just bone growing more densely than the bone around it. It could be bone infection. It could be tumor. She needed a biopsy. And she needed it soon.
I’ve already written a post about the biopsy waiting game. Each day is an eternity. Other parents have been there. First, you wait for the day of the biopsy, then you wait through the procedure, then you wait for the results. You Google it just to make sure you aren’t the only family who has waited this long for a biopsy. You recite the possibilities like prayers—dense bone, bone infection, tumor recurrence.
The Morning of the Biopsy
We pulled Lucille out of bed when the dawn light was still grey. She knew this routine; we all did. She brushed her teeth, and we left the house with Lucille still in her pajamas—pink plaid bottoms this time, paired with the pink 1984 Detroit Tigers tee shirt I got when I was her age.
Like her first biopsy fifteen months ago, this one was happening in the small operating room inside the surgeon’s office. Unlike the first one, we knew her surgeon well now, so he let us stay while he slipped the needle into Lucille’s hand to sedate her. Chris and I stood beside our daughter, holding her hands until her pupils dilated, and the surgeon told us what we already know. She was out, and we needed to leave the room.
I’d have stay if he would have let me. I’d always rather see what is happening to her. But parents aren’t allowed in operating rooms.
In the waiting room, we think things are taking too long. Each time the surgeon does not come right back…
“He must be doing more than the biopsy,” I said.
“I know,” Chris answered. The surgeon had warned us that if he got inside her bone and saw what was clearly either tumor or infection, he’d widen the incision and remove all he could.
Chris and I have gotten into the habit of not touching each other in waiting rooms. Having a critically ill child is hard on a marriage. You forget you are the kind of people who like holding hands. You forget you are the kind of couple who can do anything with each other except hold your family together.
The wait continued, and we didn’t say much else. After a time—who knew how long?—we looked at each other and spoke enough to agree that the news was definitely bad. And just then the surgeon’s assistant, still smocked, came to bring us to a consultation room.
When the surgeon came in, he wasn’t smiling. (After her radical surgery three months ago, his grin had been the first thing we noticed).
Now, he uttered some preemptive word, like “well.” But I beat him to the punch and said, “You had to do more than a biopsy.”
The surgeon began explaining. The bone looked great. It killed him (this was the phrase he actually used) to put a hole in the beautiful new bone. But drill a hole he did. And he came to a hollow space. And it was filled with what looked like mononucleated giant cells. The cells that, in Lucille’s case, make a central giant cell granuloma.
“It looks like tumor recurrence or multiple recurrences,” the surgeon said and went on to explain that it was possible the cells were infection, not tumor. Either way, the news would be bad.
Under the table, I reached for Chris’ hand. His fingers folded around mine.
The Bad News Comes
Knowing the news will be bad, either way, we wondered which we should hope for: Bone infection or tumor. This time, the wait seemed longer than Lucille’s first two biopsies. Though it ended up being the shortest by over a week. Lucille was still recovering from the surgery when the news came in.
Lucille’s surgeon is a nice person, and Lucille is a special case, so the phone call lasted for nearly half an hour. He told me she would have been more likely to lose her jaw if the cells had been a bone infection. He told me he removed the tumor during the surgery, but the surgery won’t be enough: Tumor cells were certainly still there. He assured me we caught the recurrence early. But still, Lucille would need more drug therapy.
Facing the Immediate Future
In the days to follow we will face the complex web of consequences and decisions brought on by this re-diagnosis. We will talk about oncology options and a feeding tube. We will calculate weight loss. We will hand our daughter antibiotics and probiotics as her body fights a post-surgery infection. We will adopt a dog. And through all of this, our brave girl and her brave face will absorb the news.
The tumor is back. The biopsy shows central giant cell granuloma tumor cells, a recurrence. Lucille is going back to pediatric oncology. Her beautiful, brave face will continue to fight.