* Disclaimer : NOT suitable for children, certainly none that know ours. Seriously - not kidding*
Alex said a couple weeks ago that we should post one more time. Let people know how great she’s doing. People keep asking, he insisted. A “thanks for coming!” post. Close it out.
Huh? Another post? I never really posted on demand, but rather only when one was basically fully written in my head. But - ok. How about we wait until we get the results from her follow up MRI? Surely it will be innocuous, so maybe it will come to me by then.
Haldora had her follow up MRI the evening of May 11th. The usual process is (what? You don’t have a “usual” process for MRIs?? Novice... ) ... first, MRI. While we settled in for a multi-hour process, we were told that it would be less than 45 mins of scanning, since it was just a post-procedure follow up. ... Unless of course there was something the radiologist felt needed significant rescanning.
Well, that happened. Nearly 20 minutes of extra scanning.
I’ve learned not to overly obsess. ... hahaha, just kidding, of course I obsessed, but I know it wasn’t anything I’d hear about that day, so we rolled to step 2: late dinner out. Step 3 has usually been that someone texts or IMs the next day that it looked good, or grew, or whatever. This time we just heard it was going up to Dr S for reading - oddly silent on what was seen.
If you have read many of these posts you know that step 4, sending to Dr. Souweidane is fraught with peril. The mail delivery service at MSKCC has less accuracy and quality control than if my children’s 3rd grade class ran it, after 2 rounds of cupcakes and an open tap of Mountain Dew. Miraculously, they got there, so we just had to wait for them to be read.
This always takes a long time. But this was taking a loooooong time. The REALLY sick kids get fast tracked, as they should. So waiting was ok ... for a while. Finally, late the other evening, I got an email from Dr. Karajannis.
In the movie of my life, where I am played by a young Meg Ryan, this is where I flash back to meeting Dr. Karajannis. The doctor, who ‘just happened’ to be waiting for 2 hours to meet us, and ‘just happened’ to be the Chief of Pediatric Neuro-oncology - Haldora’s new doctor. He will be played by Gael Garcia Bernal, because when I met him I was in such shock and freaked out by what was happening, that’s what I remember him looking like. Even tho he doesn’t really. Gifts of the mind.
Anyhoo, he explained there is a concern about recurrence.
He brought her scans to the Tumor Board that day for broader review and the radiologists didn’t feel there was convincing enough evidence just yet, so scan in 3 months instead of the 6 as planned. Wait and see.
* This is where I, played by Young Meg, stare off blankly, taking long pronounced blinks, breathing calmly, trying to absorb what the email is saying with 2 kids flitting about the kitchen, telling myself “don’t swear ...don’t swear ... “ *
Alex was in Wisconsin at the time I got the email and texted him the news. That’s also where he was when we got the original call about the tumor, so he’s never allowed to go back there. Sorry, Wisconsin.
It may be nothing. It may be something. Who knows. We’re back in the waiting game.
We aren’t really bringing the kids into this one yet, because plenty of anxiety around something bad coming from out of the blue already exists. Can’t imagine why.......
Meanwhile I’ve been spending my free time better understanding angiocentric gliomas, how it’s actually a 3-way genetic mutation that causes these tumors, patterns of recurrence, evolution, etc. There is a surprising amount of research, given that there have only been about 100 of these tumors identified to date globally. There’s also an interesting tie to how the genes behave and react when activated that’s similar to T-cell ALL patients, but that’s all for another time.
Meanwhile, Haldora ran her “Come Back 5K” on June2nd, 4 months and 1 day post major brain surgery, and did awesome. We are now looking to late Sept / early Oct for our next race. She’s still teaching herself Python programming, and is on level 33 of CodeCombat. She and Hunt had chess camp last week (because we believe in raising nerds), and ice skating is up next week. Life, all in all, still looks incredibly normal.
I forgot ... in the move of my life, Alex will be played by Paul Rudd. Because ... Paul Rudd.