A little bug can be a big deal
Neither of us have ever been germophobes with Wes, and fully bought into the notion that a little filth was good for his immune system development. We let him play barefoot all over Long Beach, sleep on the floor of the bar, and do anything short of playing with dirty needles.
Those days are over, at least for the duration of his leukemia treatment. He’s now got a severely compromised immune system that will spiral towards zero in the coming years, limiting his ability to fight bugs of all kinds. Everything from childhood diseases like colds, flu, and chicken pox, to common infections take on seriously new risk that will likely lead to hospitalization each time. A low grade fever is now cause for immediate contact with the hospital, and a moderate fever will lead to admission. Aside from the cancer itself, the potential for infection or other illnesses is the greatest risk to his health we have to manage.
As a result, there are several measures we have to take, and we have to insist from everyone who comes into contact with him.
- We are avoiding any densely occupied spaces, such as movie theaters and Chuck E. Cheeses (oh, darn!) and large, enclosed gatherings of people, especially kids. Wes can still go to the park and playground and we will be doing our best to make sure he still has a playful childhood, but please understand if we can’t come to some birthdays and other parties, for instance.
- Anyone who enters our home has to be free of common cold symptoms for 48 hours, and will be asked to clean their hands when they arrive.
- Any toys played with by other kids need to be disinfected before Wes can play with them. We carry wipes!
- Please ask before any close physical contact like hugs and kisses. Most likely it’ll be fine but we’ll probably ask you how you’re feeling and to Purell your hands – don’t be offended, it’s as awkward for us as for you.
- Everyone must have current vaccinations, because Wes is that member of the pack who now depends on herd immunity. He won’t be able to have any additional vaccinations for eat least the next three years, so if you don’t believe in vaccines you won’t be entering our home or having close contact with Wes. Period.
Thanks for working with us. There’s nothing more important to us than Wes’ health and maintaining good boundaries against otherwise harmless bugs is going to be critical to his recovery.
Roger,
Reading your accounts brings a flood of memories forcing a hindsight realization of how far we’ve come. Once you emerge from the tunnel, you’ll accelerate to normalcy much sooner than you can fathom now. Because of our geographical distance from any specialized care, our Mallory was airlifted twice for infections. We were forbidden to drive the 100 miles due to perceived risk. Both times, and all others, her symptoms subsided and doctors could never determine etiology. We were transported three times in a year, twice in one week. Keep a bug-out bag near the front door or in your car.
Your skilled writing reveals that you retain a sense of humor—arguably the most important medicine of all. Give little Wesley a hug from a stranger and tell him how very brave I think he is—you and Mom, too. .
Tom – it is so early in the process, as I’m deeply aware, and one of the reasons I write. I want to remember this all, and I want Wes to someday have some sense of what he triumphed over as well as just what it means to have community and social capital. None of us can do this alone – it’s too much, too big, too heavy, and though it is still early I know we can’t get through this without humor – morbid as it may be – and vulnerability and openness and flexibility.
I look forward to someday meeting – your story, like so many others we’ve been connected to already, is resonant and inspiring. None of us can ever prepare for this, but it’s so empowering to know we can fight through.
Love to you and Mallory and your whole family,
Roger