“So seriously, why are you travelling to the Arctic Ocean and what’s that got to do with Juju?”
That is probably a fair question, and it is one I will assume you have at least briefly pondered, because I’ve certainly gotten it from others along the way. The answer has a couple aspects. Here goes.
For starters, we have always travelled a good bit. This is in part because visiting our extended family and friends takes us to far flung corners of the US. We also like to go and explore interesting places, have new experiences, and we’ve been fortunate to end up with many wonderful people we know to visit just all over the place when we finally do get there. That’s easy enough, right? Sure, the mid-point of a long road trip is never a picnic, but once you get beyond that, who doesn’t like to travel?
Enter ‘neutropenia,’ which is not a very common word. My understanding is that it is Latin for ‘neutralize everything you come into contact with using an industrial grade disinfectant.’ Neutropenia is the state one enters when they lack sufficient neutrophils to ward off infection (neutrophils are a crucially important type of white blood cell you might never have heard of before). There are countless very, very bad things that result from a person undergoing chemotherapy – the process of scientifically poisoning yourself to kill cancer and stopping short of going too far with the host – but a neutropenic patient tends to remain sequestered, above all else avoiding sick people and public places filled with hidden sick people and germs, etc. The same goes for everyone with whom they regularly come in contact. The whole family does whatever it can to stay healthy, keep things very clean, wiping down doors and handles and washing hands into cracked oblivion. You stop taking unnecessary chances. If someone obviously ill came into my office, I literally asked them to stand by the door and we often rescheduled meetings if it was not an urgent matter. I almost never touched surfaces in common areas. (I also went a year without a cold…)
But you start to stop going outside, especially with your patient, unless you really have to. If you like to be outside your home, and you have the strength and will to do so, this becomes a craving.
In the couple days after a chemo session (in Juju’s case they were administered every three weeks), neutrophils begin to plummet. By the end of the week, there might be as good as none left. The timing of three weeks is about what it takes to recover the neutrophil count so that you can be physically ready to handle another round of chemo. It’s a bit sadistic, in a way, but that’s how it’s done.
Getting ill can happen quickly. The fever threshold is very low, so pretty much as soon as there is a strong hint of a fever, you drop everything, call the clinic, pick up that overnight bag by the door, and then you find yourself driving to the hospital. Everything turns on a dime and only very, very rarely are hospitals stays quick (because the blood cultures that will prove an infection always take days, and nobody wants to take chances). There’s no waiting to go in, as waiting could literally be fatal if an infection were to be left to rage unchecked. We were told we should make sure that we could be there in 90 minutes, no matter what.
I’m probably not the only person who thinks about distance in terms of time.
This is a roundabout way to say that when neutrophils were high enough, the weather was good (enough), and our little patient felt strong (enough), we Journeyed. On foot, on shoulders, or blazingly intrepid on her scooter, we cruised over paths and cobblestones in as many picturesque places as we could. We were living near Frankfurt, Germany during Juju’s first course of chemo, so pretty much everything was new, special, a bit romantic—an adventure. We never ran out of countryside, beckoning ancient villages, crumbling keeps and restored residenzes, churches with spires, ponderous and sometimes tilting towers, the occasional Roman ruin, and the myriad winding alleys of towns that leapt from the imagination. We journeyed, together, striving, exploring, adventuring. We didn’t know it at the time and certainly didn’t think about it this way, but instead of allowing ourselves to be locked in the living room, looking out through the windows at the garden, we urgently were creating all of the memories that we could that would be what would have to last us for the rest of time. They were good days, they were hopeful days. I certainly thought we were winning and our family journeys were joyful – even if they were limited to increasingly dense sprinkles on the map in a 90-minute radios around Frankfurt. We were on a quest to discover as much as possible.
To journey in Juliet’s honor is inherently connected to the things that we did with when we were closely counting our time together. It’s just what we did, and it’s what we’ll do. There admittedly is irony in that two of Juliet’s primary objectives when travelling were to eat dinner in the hotel restaurant and enjoy a hot tub…neither of which is necessarily the thematic calling of trekking to the Arctic. Rather, I think of this as a Journey to the end of the Earth. Usually this is spoken with some romantic hyperbole. In our case, we seriously are going to the end of the flipping Earth…or at least the Earth that touches the sky and we walk on without risk of sub-2 minute hyperthermia.
So, to answer the question, in addition to travelling in her honor, this is a form of quest.
Quests aren’t easy. Her Journey was not easy, nor should ours be – neither the goal nor the path. Juliet endured more chemo than I can remember, daily radiation for a month, multiple surgeries and full anesthesia more times than I can accurately estimate…and daily with the radiation treatment. She never really complained and what she feared most was that moment leading up to the fingersticks she still had to get for certain blood tests.
We want to take you along on this Journey. In turn, I’d like permission to complain freely about the proverbial fingersticks. I’d like to share my memories of Juju and her bravery, share my regret that she is not with us today and that I have a reason to be doing this at all. I’d like express my remonstrances that our world is forever unmoored by her absence and that too many other children are seemingly denied a better chance. We’d like to make a difference and – together – we think we can.
Journey with us…