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.

Back-to-Back Posts #1 – Next Festival

I’ve got two things to post about that are pretty unrelated, so I’ll write this one now, and follow it later today or sometime tomorrow with a much longer one, an update on my granddaughter’s progress.

After more than a year off for the pandemic, I’m back to attending local festivals with my children’s books and the Boone series. The most recent additions are the fifth book in the Boone series, Choosing Family, and a children’s book, That Doesn’t Belong Here! I’ve got a couple more starting to take shape in my mind; more on those as they develop.

This weekend, Oct 22 and 23, I’ll be at the Mountain Makins Festival in Morristown, at the Rose Center. My table will be in Prater Hall in the Authors’ Corner. This is my first time at this festival, and I’m looking forward to trying it out. The weather is supposed to be nice, so stop by if you’re in the neighborhood and say hello. Love to see you. 

A Fine Day

My thanks to those who came by this past Saturday to the crafts fair out on Washington Pike. For those of you who missed it, the weather was beautiful, I talked to a bunch of nice folks, sold a few books, and, as you can see, got a chance to play a little music. At one point we had, in addition to my hammer dulcimer, a guitar, a mandolin, an autoharp, a fiddle, a flute, and something that looked like a cross between a banjo and a ukulele. It was lots of fun.

The Network Is Always There

My oldest grandchild (7) has leukemia. We got a 1:30 AM phone call from my son a few days before the July 4th weekend telling us the news. She’s in her first round of chemo at Cincinnati Children’s Hospital, a fine institution by all accounts, and unfortunately 300 miles away from where my wife and I sit, deeply concerned and wishing we could do more than take a shift caring for their house and other children.

Change is, of course, the only constant, and our lives are in a continual state of flux. Usually this movement is incremental and goes on below the surface of our awareness. Once in a while, though, there is a blinding flash and everything is dramatically different. Short term plans are abandoned, whatever long term plans have been made are shelved or discarded, the relative importance of all the different facets of our lives undergoes a seismic shift, and we are stripped down to the immediacy of the present (which is where we are all the time anyway, but not cast in such stark relief), looking around for solidity. 

The last two weeks have been an exercise in riding the waves, making decisions based on information that is known to be incomplete but because of circumstance has to be enough to be grounds for deciding. From chaos order begins to appear; in the next hour, or day, or week, things begin to happen in a more predictable fashion, schedules can be made, and work, child care, pet care, house and garden maintenance can be arranged, and so on. Almost all of this has fallen to my son and daughter-in-law, and has had to be done while dealing with one piece of gut-wrenching news after another. 

The network that surrounded my son’s family almost immediately is part church, part community, and part extended family, and before long the dogs were living in temporary homes, the yard was mowed, the garden weeded, the two middle children were visiting family in Tennessee, and all manner of support began flowing into the hospital room that has become my granddaughter’s temporary world. The Ronald McDonald House provides nearby eating and sleeping facilities, and my son’s employer is making arrangements for him to continue to work, remotely when possible, so his position is secure. Since his health insurance, like that of so many, is tied to his job, that is a very big deal.

When my son was in elementary school he became ill with ulcerative colitis. The final healing stage of that journey took place, coincidentally, in Ohio, at the Cleveland Clinic. What my son is going through right now with his daughter is certainly different from what I went through with him, but there are enough similarities to trigger many memories. My family was surrounded by a network of care then, as my son and his family are now.

These networks are always there, invisible until they are needed, then emerging into action and support. Sit with this idea for a bit, let it ripple out, and the echos start coming back from a wide variety of places both sacred and secular. Jesus said the kingdom of heaven is at hand, which I used to think meant coming soon but now I believe means exactly what it says. Thich Nhat Hanh says that the Buddha never meant that Nirvana was something off in the future; it is here, now, if only we can see. Lao Tsu says that giving and receiving are the same thing, that this is the great secret of life. Rebecca Solnit’s book A Paradise Built in Hell is about people responding to disaster with grace and caring and practicality while the official response was still in the planning stages. The shooting at my church, an openly political act of hatred, resulted in a wave of care and support that crossed denominational, geographic, political, and socio-economic lines. When asked by a cynic in the wake of the World Trade Center attack where God was in that situation, one person replied, “The last time I saw Him, He was driving an ambulance.” In a similar vein, Mr. Rogers once said when disaster strikes, look for the helpers. This is obviously an incomplete list.

I told a friend I see occasionally while walking our dogs at the local community center about what was happening in our family, and he said, “My prayers are with you.” I replied that I was a Unitarian; I’d take thoughts, prayers, healing energy, love, sacred dance, whatever you’ve got to throw at this thing. He nodded and said, “Spokes in the same wheel.” 


A Boone Series Box Set

I’m pleased to announce the release of an ebook box set of all five books in the Boone Series. Stumbling Into Adulthood takes the reader from meeting Boone at 16, trying to survive in an abusive household, through the disintegration of his family and a long journey of learning how the adult world works and where his place is in it, to the beginnings of his realization of what family can mean in Book Five, Choosing Family

Also in the box set are essays by Sandra Jessel, Tilmer Wright, Jr., and Ann Hatmaker, looking at the series from the perspectives of an educator working in a regular school classroom, a writer exploring how Boone’s character was developed over the course of the series, and a teacher and advocate for at risk youth discussing the impact Boone’s story has on young people living out on the fringes of society. I contribute a couple of essays as well, and there are two bios, acknowledgments, and a listing of the other books in my catalog.

The box set is available only in ebook format and is currently listed on Amazon and Apple Books. Kobo, Barnes & Noble, and Google Play have the set in their review process and I expect the book will be available in those markets soon as well.