Update from Cousin Johnny 16 July

Update from Cousin Johnny 16 July 

Hey all! It’s Johnny, chiming in for a follow up Schmirtz Report. Please please please accept my apologies cos this post is LONG but it’s got all sorts of juicy updates and details about ways you can help in the coming weeks/months. But first, please enjoy this adorable photo I took of Kev and Ron the other day. When Kevin saw it he burst into tears, but that’s not been terribly difficult for him lately. Trust me, I’m taking full advantage of this weepy emotional state!!! 

Next, let me say this: I’ve been able to meet a lot of you on the email list, and many of you I already knew and loved. Hopefully during the last few weeks, you’ve been able to tell how grateful I am for all your support. If not, or we haven’t met yet, let me take this opportunity to thoroughly reassure you: we are overwhelmed by it all. Sincerely, it is an actual bone fide miracle to have your support - and SO MUCH OF IT! We’re in ridiculously good shape as a fairly sizable community to continue to rally around in support of Ron and Kevin.  

So I’m writing the report today to give Kev a break, and because I wanted to be the one to take the reigns on organizing a more concerted and detailed request for support as we head into the next phase of everything here. 

First I thought it might be useful to update you on our meeting with the radiology oncologist on Monday. He’s easy on the eyes, so you know Kevin and Ron are pleased as punch to interface with him. The nurse practitioner is a lovely woman who’s got a sense of humor that borders on bonkers, so of course we all love the heck outta her already. 

In the interest of full transparency, and to inform your prayers and intention setting or whatever it is you’re doing, what we’re dealing with here is a glioblastoma.

It’s a primary form of brain cancer which we have explicitly been told today is relatively treatable but not curable. The next steps from here are to engage in targeted radiology over the course of the next 6-8 weeks, with supplemental oral chemo and some powerful antibiotics he’ll take on weekends to ward off things like pneumonia or other afflictions that might pop up since his immune system will take a pretty sizable hit. 

From that point on, it’s basically a matter of maintaining good nutrition, proper exercise, plenty of light socializing and of course loads of rest. If we can get Ron to curb his cravings for a range of carb-and-sugar-loaded foods, keep him exercised with daily walks, and keep his spirits up (which should be pretty easy to do, given his default mode setting of being basically almost never NOT optimistic) he should be able to defy a lot of the odds. We are also going to consult with a nutritionist and functional medicine doctor nearby with the most gorgeous offices I’ve ever seen, so we’ll have that kind of holistic health advising happening too. 

And now for a little more transparency. We were told that average survival expectancy is somewhere around 15-20 months. 

Let’s go ahead and shoot for a lot longer than that, shall we? 

Here’s where you come in. We’ve created a Caring Bridge site that we’re thrilled to use to help alleviate a lot of the potential organizational chaos of securing rides to radiology appointments, (which will commence in a few weeks, and will be daily, Monday thru Friday... the time commitment is the time it takes you to drive him there and back, plus about 1/2 hour for the actual treatment, so not a huge burden!) and the more fun stuff like his daily walks around the neighborhood here in Queen Anne. 

At the moment, those two items are our top priorities in terms of outsourcing. 

The Caring Bridge website has a handy page we’ll link to below that provides a calendar of needed driving or walking events. Simply click on the date you can help, and it should block it out, indicating that it is taken care of. Like I said, at the moment, radiology appointments are a few weeks out, so we’ll update ya with a week or so notice to see who can help. 

Otherwise, this calendar will be updated regularly as we load up on Drs appointments soooooo if you could keep an eye on it at your most frequent convenience, it would reduce the amount of times we need to bug you about it! And as you know, the less there is to worry about, the better the atmosphere around Ron will be, and the deeper healing his body will be able to sustain. 

If you are eager to help, but aren’t available for anything currently on the calendar, we’ll work with ya! There’s also plenty of opportunity to send comments and smiley emojis on this site, so feel free to load us up with jokes and warm wishes toooo. Those are probably the best medicine Ron can get. 

OK! So I think that’s all we need to go over today. Thanks for bearing with me. 

You probably already know Kevin hates talking on the phone haha. My number is 917-796-2425 and I’m more than happy to take your calls if you have any follow up questions. 

Lotsa love,

Johnny