Back-to-Back Blogs #2 – A Long, Strange Trip So Far

My granddaughter will find out sometime today if her numbers are high enough to start the next round of chemo. 

Since the first of July, when she was diagnosed with leukemia and admitted to Children’s Hospital up in Cincinnati, numbers have dictated pretty much every move, every change in protocol, every decision by the team creating and implementing her treatment. It’s incredibly complex, and even out on the periphery as I am, it’s clear that a staggering amount of data is being continuously collected and used to make decisions about what to do next.

Impressions are forming: Cincinnati Children’s is a fine hospital, the Ronald McDonald House there is an oasis, the network of support surrounding my son and his family as they work through this is strong, resilient, and made up of church, community, employer, extended family, and hospital staff and volunteers. 

Among the many things I’ve learned during this last several months is that the folks at St. Jude’s in Memphis (by all accounts the leader in this kind of treatment) share protocols and consult with other hospitals, like the one in Cincinnati, on treatment options and individual cases. This is how science is supposed to work, transcending the artificial boundaries of state, region, politics, etc., trying to find the best way to help a seven year old girl and her family caught in desperate circumstances.

So what we have is a combination of formal and organic structures operating in concert; the hospital, its staff, and treatment options and procedures, alongside the fluid network of church foundation, community support, employer accommodations, extended family coming into town to help with the other children in the family, and the uncounted number of volunteers lending a hand inside the formal structure to fill whatever gaps they can.

Not the least of these is a music therapist at the hospital, who helped McKinley with the chord structure for a song she has written. I sent the therapist a GarageBand recording of a hammer dulcimer accompaniment to her guitar, and I’m looking forward to hearing the completed piece, with my granddaughter’s vocals. 

Of course the point is not the finished product, any more than the book she is working on, which may or may not ever be published. The process of creation is healing on many levels, and the act of making something beautiful, or melodious, or interesting, or funny, is food for the mind and spirit. The mind-body-spirit connection is not part of the scientific protocol, but it is nevertheless a force for growth and healing. 

If her numbers are high enough, she’ll start round four of chemo, probably today or early tomorrow. As it stands now they are planning on five rounds altogether, which may mean this long strange trip can be wrapped up sometime in January. Since a large part of this process for my son and his family has been making and then remaking plans, it’s difficult to predict an endpoint. As things stand right now, she’s still a very sick little girl, but the treatment is progressing as it should. 

I am cautiously optimistic.