Posted by Roxanne Hawn | Posted in Adverse Vaccine Reaction - Recovery from Meningoencephalomyelitis | Posted on 18-02-2013
Since Lilly’s ongoing weird / scary bladder infection was diagnosed a few weeks ago, we’ve added a number of experts to Team Lilly. While focusing on improving her quality of life, we’re still wrestling with medical decisions that will likely dictate the length of that life. Simply put, Lilly remains tenuously perched on a narrow ledge of “remission” from the deadly consequences of brain and spinal cord inflammation. She is NOWHERE near normal neurologically, but she is holding steady … for now.
In general, I’m the optimistic one in my marriage. Tom, for all his amazing qualities (that have made me love him more each day for nearly 26 years), can be SUCH a boy and SUCH a naysayer.
Oddly enough, in this current situation with Lilly, he is the believer — the one of faith and hope and optimism. And, I’m playing the doomsday roll.
Where he sees our “Miracle Girl,” who has (admittedly) defied the odds, I see every wobble, every hint of strain on her face, every everything. That’s the thing with working from home and with caring for Lilly 24/7 for more so many months now. I’m on constant watch.
Tom still believes Lilly will overcome the inflammation for real if we can simply get her farther from the administration of the rabies vaccine that began it all. Even without the cytarabine (“chemo” drug), he believes Lilly will live a long time.
I, however, have read the studies. I’ve met with our growing team of experts again and again. I’ve seen their faces when they talk about Lilly’s prognosis … if they will answer the question at all.
My sense right now is this:
- Lilly’s brain and spinal cord inflammation will never fully go away.
- To keep it at bay, we’ll need to use powerful immune-suppressing drugs for the rest of her life (however long that is).
- Each time Lilly has fallen out of remission it has been worse than before and has taken more intervention to boost her back onto the ledge. Each recovery is less complete, less satisfying, more debilitating for her body.
After Lilly’s massive relapse in August 2012, Tom and I pretty much agreed that her next terrible bout would be her last. We simply cannot afford $8,000 ICU bills again and again. And, I personally cannot take the pain in my heart.
Plus, how much can our sweet girl take? Honestly.
So, now we wait and make each treatment decision as it comes — like riding a never-ending escalator. We face ONLY what’s directly ahead of us.
Right now, we’re focusing mostly on this really CRAZY infection Lilly’s bladder / bladder wall. Last week’s test results showed:
- A small amount of blood in the urine
- No bacteria (e coli) in the basic urinalysis
- Air remaining in Lilly’s bladder and bladder wall
That seems great until one of our veterinary team members pointed out that the air indicates there is still an infection brewing. Potentially an anaerobic one that would not show up on culture.
We need to eradicate the infection before we can truly talk about Lilly’s future.
Trying to Think Positively
To turn my negative thinking around, I’ve been casting about for ideas like what our pal KB from Romping and Rolling in the Rockies used when her Lab K was battling bone cancer.
So far, my only simple idea is to put a penny in a vase every day Lilly remains at my side. I’m using a vase from the memorial service from after my friend Jody died. It’s oval glass, and it sits on the bookshelf in my office … in front of my favorite photo of Lilly (on the second shelf). The third shelf is where I keep photos of the dogs we’ve helped cross over:
- Penelope Grace, our dalmatian who died of kidney failure at age 14 1/2 (in 2004)
- Cody, our yellow lab mix who died of hemangiosarcoma at the age of 9 (in 1999)
Since Lilly is my first “Heart Dog,” I figured I would start my tracking on Valentine’s Day. So, today, there are 5 pennies in the vase. I figure if we go a long time, I can either use the money to buy myself a small gift or donate the money to the humane society where we adopted Miss Lil. If we don’t go long, then I’ll keep the pennies as a memento.
On the advice of our new veterinary acupuncturist, I’ve been poking around on Pinterest looking for ideas. I started finding lily glass beads. I’m not really a jewelry person, but maybe I’ll collect and or get myself one special bead as a remembrance. You can look at our Champion of My Heart Pinterest Board – Dog Memorial Ideas for the what I’ve found so far.
Likely Taking a Break
We may not be online here (or anywhere) much in the coming days / weeks as we wrestle with some potentially unthinkable decisions. OR, to frame that better, we’ll use the time to make Lilly’s daily life as amazing as possible.
I’ll try to post photos and little vignettes as I feel up to it.
And, we did promise to post a book review next week, so look for that.