In a rare moment of vulnerability, I shared with someone yesterday that I’ve been afraid to write. In case the Universe had forgotten about us, in case we were due to be left alone for a while, I didn’t want to raise my hand and remind it that we were still here, still fighting. What good comes of remembering and reminding?
On February 17th at 6:17 p.m., Ky had officially been in remission for six months post bone marrow transplant. I walked to him at his computer desk as the clock ticked from 6:16 to 6:17 and kissed him on his head, just as I had after pressing start. “Mama….” I couldn’t help it. 6 months.
Three weeks earlier, we’d been given permission from Ky’s Boston team to have his central line removed. They had started weaning him off the major immunosuppressant that kept his body from attacking the donor marrow. As a result of that, he doesn’t require labs as often and since that’s really the only purpose his line has served in a while, it was time.
Except, it wasn’t. Ky wasn’t ready. Since May, Ky has had a central line. That line was the way most things medical and miracle went from the outside world into Ky’s body. It sent chemo into his system, medicine to combat the side effects of the chemo, nutrition when he couldn’t eat, and, of course, his donor marrow. When the line was first placed, he wanted to know immediately when it could come out. Cancer makes you look for strange security blankets and for Ky, it was one. In a weird way, it was for me too. It was a way to measure time. Every 12 hours we flushed it, Heparinized it, and capped it off. Every 4 days we changed his caps. Every few days (though it should have been less frequent), we changed the dressing. During a dressing change a couple of weeks ago, he looked up and said “When can I get this out?”. Of course it was a Saturday, so there was no one to call. Monday arrived and so did a huge snowstorm, so I called on Tuesday. And this morning, Ky’s line was removed.
We drove away from Maine Medical Center just before noon, we’d only been there three hours. I watched as the nurse accessed his line the last time, a little teary that I wouldn’t be the last one to do it. I reminded myself that is how it’s supposed to be – leave the medical things to the medical professionals, leave the mama-ing to the mama.
While we were there, we had two amazing visitors who came to see us in the surgery unit. The trek from the unit where Ky spent his summer to the basement Maine Med involves several floors and two absurdly slow elevators. But, two of his favorite nurses were undeterred. Wendy arrived first and Ky’s grin lit my whole soul up. Wendy was, without a doubt, Ky’s partner in crime. No one was safe when the two of them were armed with Nerf guns or silly string. She hadn’t seen Ky since just before we went into transplant. It was on Wendy’s shift that we had to shave Ky’s head…and now he was in front of her with a beautiful head of baby soft hair. Shortly after Wendy left, Misty arrived. Misty sat with us on a shift right before the 4th of July and watched fireworks for a few minutes. She was over Ky’s shoulder as I took one of my favorite pictures of him, his face aglow in the light. We didn’t know it at the time, but a really rough night waited for us. She knew something was up before she transferred our care…and she made sure he was on their radar. Two doctors had to take a bit of a backseat for our reunions with these two incredible women. Neither seemed to mind. As Misty hugged Ky and rubbed his head, I leaned over to one of the doctors and explained that he was pretty close to some of his nurses – there was a look in his eye that let me know I didn’t need to explain. He understood.
Ky’s procedure was fairly quick and straightforward. As I’d done so many times before, I walked him into the operating room and told him that I loved him repeatedly as he counted up to ten, resisting the anesthesia for as long as he could. His hand feels impossibly heavy in those first moments when he goes under. I kissed his forehead and thanked the team, then returned to the waiting room to wait. Twenty four minutes later, his surgeon appeared. He explained that all went well and that they’d be out to bring me to him in just a few minutes. “Congratulations,” he said as he shook my hand, “today is a big day.” When Ky and I were reunited in recovery, there was a cake waiting for us from the hospital. Today was a big day.
On our ride home, we listened to NPR. Among the top stories at noon was Donald Trump and the way he plans to address the Affordable Care Act. They cut to a clip of him saying “Nobody knew that health care could be so complicated.” It was ironic, at best. I thought about the last nine months. I thought about the care we (used intentionally) had received from social workers, housekeepers, a man named Tom at our medical supply company who has sent all sorts of medical things to our house, other families, our community, doctors, nursing assistants, and, of course, our beloved nurses. I think they know just how complicated it is.
But then there’s also the least complicated part. The best hug I’ve had in a long, long while came right after surgery – a boy and his mama, nothing medical in between.
Within moments of seeing me, he asked when we could go home. He wanted the blood pressure monitor off and could they please take out his IV? Why, he wondered, did they have him hooked up to all that stuff?
We’re still here, Universe. We’re still fighting.