BMT Day +4: The Labyrinth

Living in a hospital feels like a constant walk through a labyrinth. There’s a path. It’s defined for you. There are twists and turns, but it’s destined towards something. You can’t always see it. In order to move through the journey, you need to take one brick at a time.

I’m probably not the only one who feels that way since when the NC Cancer Hospital (connected to NC Children’s Hospital) was built in recent years, a labyrinth was placed outside on the ground level. Zach and I have walked the labyrinth, or “sacred path,” probably 5 or 6 times throughout all the times that Luka has been in the hospital, even with our sleeping lion once when he wasn’t on restrictions. As Maia has grown up going to the hospital to visit, she’s in the past few months gotten mature enough to follow the path.

The labyrinth instructions say that how you feel when you walk through is indicative of where you are with whatever you are working through, like a form of meditation. It’s seen that how you walk through the path of a labyrinth is symbolic of the journey to your inner self. Naturally, Maia walks the path as the leader, with a smile on her face, exuding enthusiasm and encouragement. She takes the task seriously and focuses on following the path closely. She says quick witted observations out loud in her extroverted way. Once she hits the home stretch, she runs with full force to the center and jumps up and down with joy. Maia’s sacred path to her inner self could not be more accurate. All that was after she walked into the clear door in our hospital room resulting in a slightly cut big lip and some quick ice pack making by our beloved Dr. Philip and a very helpful nurse. It was one of those days.

Zach is focused and quiet. He makes a quick witted joke and flashes a smile with his eyes. He’s steady, calm, and confident. He let’s us go first. He’s a soul man, that’s for sure.

For me, this was the first time that I walked this path as we are here during Luka’s bone marrow transplant. Every other time that I walked the labyrinth, I really was working through how I felt about moving towards the transplant. In the past, I’d always finish the labyrinth feeling relief and resolve that it will be when it will be. Now, being on the other side of transplant is an incredibly open-ended feeling since so much in undefined. You’re waiting for new cells. You’re waiting to see if the cells take over. You’re waiting for reactions. You’re still on restrictions. You’re waiting to see if you get discharged. You’re waiting to see if you have to be re-admitted. You’re waiting, and not for a specific “Day 0.” Today, I can honesty say that when I walked the labyrinth, I had no thoughts other than a slight smile on my face (contrary to the rest of the day). I must have meditated without trying to, and perhaps meditating away from all the noise of the hospital. But, after the labyrinth, there was that sinking feeling of, “Ok, now we have go back to the room.” Maybe in a way, walking the labyrinth was a reminder that my inner self is doing OK, but my hospital self needs help.

Luka may feel that way, too. After a rough night filled with labs draws, more lab draws, vitals, pre-meds, a blood transfusion, and many more vitals — Luka remains ROARING quite a bit and we’re all pretty tired. It was one of those days for him as well, and after a already tiring week. He’s also having some blood pressure issues that keep resulting in more and more medication and now possible fluid retention. It’s all somewhat expected given everything, but there were some hospital administration aspects that could have been adjusted to help kiddos get the rest they need in treatment. Thankfully, we had some helpful people listen (Dr. Philip, a social worker, and a helpful nurse) and make adjustments so the kids on our floor don’t have to have midnight labs or transfusions in the middle of the night. It wasn’t the first time I pointed out that hospital efficiency seems more important than sick children getting sleep, but it seems to have resonated with the right people today.

I guess that’s a small victory in walking the sacred path of living in the labyrinth of the hospital, and how small changes can hopefully go a long way. Hopefully, Luka (and mom) gets much needed rest tonight and tomorrow is a better day.