To quote from the new Pink Panther movie (in a deep French accent):

“Let me get you up to speed.

We know nothing.

There — you are to speed”.

Actually, there are a few things we do know, although in the end it doesn’t get us much closer to an ultimate answer. We know that none of the experts are in agreement yet as to what this “thing” is. There are a couple of options;  the first being relapse (henceforth referred to as “the bad one”). The second is a late-effect as a result of radiation therapy — not cancer, but a breakdown of some brain tissue that could land somewhere between a passing nuisance and something more. We’ll call this one the “not-so-bad”.

We also know that, whatever this thing is, it’s not in a place where you can easily get to it to biopsy or remove. This is complicated by a slightly different location than the initial tumor sight — not to mention a brain that has now completed a significant portion of its hard-wiring. A surgical answer is potentially risky, if possible at all.

So, the next step is a spinal tap to check and see if there are cancer cells in VB’s Cerebral Spinal Fluid (CSF). If there is, then we know it’s “the bad one”. If there isn’t, then we’re no closer to the truth. Meanwhile, the vast expanse of world knowledge in pediatric neuro-oncology, neurosurgery and radiology is gathering for a massive pow-wow Thursday morning to study scans, debate merits of each possibility and seek more consensus — which they most likely will not find if the CSF is “clean”.

Lastly, VM and I will pay a visit (sans little one) to meet with the lead docs on Thursday afternoon, who will present to us their best guess and get into the weeds of the unknown. The reality is we may have to wait for follow-up scans in the coming weeks to reveal more;  or for symptoms to arise that would indicate one way or another — whichever comes first.

The “Waiting Place”, as Dr. Seuss would say. Fun, isn’t it?

On a technical note — knowing that things may move fast at some point, and access to blog-writing time and space isn’t always in the cards, I’ve joined the techno-happy and set myself up at Twitter. You will see a link on the right side of the page. I will use Twitter to post short updates when there’s something to share and I’m not in a place to update the blog — like “on the road”, or “in the hospital room”, or “orbiting Mars” (what — it could happen!).

Pull up a chair and stay awhile, won’t you?


About vampdaddy

Father...Sage...Artist...The Weird One...I am many things to many people. View all posts by vampdaddy

9 responses to “Holding

  • Patti C

    Feel free to place my name on one of those chairs, I’m here for the duration.

  • SusanT

    You do not know me but I stumbled upon your blog via “My Cancer” quite awhile ago. I check in occasionally and I was so sorry to see that you are facing the big unknown. I will certainly keep you all in my thoughts and prayers. What an infectious little doodlebug you have there. Now I will take my chair…

  • Sara Desrosiers

    Tym, havn’t seen or spoken to you in many years but please know that I’m following your story very closely here. praying and keeping watch and hoping the wolves are kept at bay.

  • Mette

    Zoe Earlywine’s mom here (another ATRT kiddo). I’m getting deja vu reading through your post. I think a few of us ATRT folks have been having some spot scares in the last few months. Some ending up being “the bad one” and some ending up being “the not so bad”. We did the CSF test and the wait-and-see and ended up with clean scans 11 weeks after the spot first showed up. Those with less positive results are having promising experiences so far on treatment for recurrence. Just wanted to offer some hope and encouragement. I know how terrifying this is.

  • TwoBusy

    Fingers, toes, arms, legs, eyes, hearts & minds crossed and fervent in hoping/wishing/praying for “not so bad.”

  • mumma boo

    I don’t suppose there’s a chance that the tech smudged the scan, huh? 😦 Show me to my chair, my friend, I’ll bring the coffee. Lots of love to all of you. (((((hugs)))))

  • Lainey-Paney

    Stuck between a rock & a hard place…
    …praying for you guys.

  • heather~*

    You’re in my thoughts and prayers as always. Fingers and toes crossed that VB’s CSF is clean.

  • VB 12, C0…Right? Yeah, Sure. « Vampdaddy

    […] readers may recall that last year we had a relapse scare. In the end it turned out not to be the return of the “big bad C”, but rather some […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: