Penn – LIVING IN THE WINDOW

Sometimes it seems as if we’ve become experts in seizing them moment, especially recently. What could easily be a highly emotionally charged predicament is a business for us now. We gather the information, analyze the situation, come up with a plan and execute it in the least invasive way possible. Dean’s drive and commitment to his family, his work his teams and his music have gotten him up and out on days where most of us would self medicate and waste the day away. When God gives us a window of time when we don’t have to react, we take it.

This was the case, two weeks ago, just after his last round of hard core chemo, side effects in full swing. On a whim – well as far as he knows – we were swept away to New York, with the best of friends, to escape the recent news, and soothe our soul. He totally rallied, with a smile. It was a blink of an eye, our night at Brooklyn Bowl – The Soul Rebels, John Medeski, laughter, dancing, and even a few strikes in the lanes. We’ve never been bowling together. Dean “can’t bowl” after his motorcycle mishap a lifetime ago. Dean cant bowl – ha! I think he ended up wining the game. Just another superpower he has under that cape. It was an awesome night, I might even venture to call it epic, we were all in agreement. There’s something magical about spending time with Dean, his passion for life is contagious, and it’s a true reminder of how we should all be living in the moment, sharing our hearts and spending more time with people we love, doing what we love.

(Oh – and Brooklyn Bowl – Holy Moly! That gang couldn’t have been more hospitable. If you ever get a chance to see a show there, do it! I think it might be one of our favorite music venues ever, second only to The Fillmore in SFC.)

So- the latest news. While the docs have been pleased with the results of this knock ‘em sock ‘em chemo cocktail he’s been withstanding for five or so months- there are a few tumors growing at a faster rate than we’d like, and a change is in order. We thought he’d get a break- maintenance chemo for a few weeks, but unfortunately that’s not the case. As I write this, he’s in recovery, post biopsy, to gather more molecular data. The sample will be sent across the miles, and we’ll wait (a few weeks) for the lab to report their findings. In the meantime, he’ll be on a new regimen, IV chemo every three weeks- a definite improvement over the 3 hour weekly sit he was withstanding for the last 30 weeks. On April 1st, he’ll begin seven weeks of radiation to his lugs, five days a week. Ugh. it will certainly prove to be a challenging Spring, but nonetheless, one filled with soccer games and family dinners, longer days, lots of music, magic, rebirth, and a quick hit of NOLA love late April.

In the meantime – we have a few fun things on our schedule and would love to see you out there with us!

Up for a party? Join us on Saturday March 16th at The Princeton in Avalon as Dean and some of the local fellas jam at the Kanen Keating- Wear Cancer Benefit. Kanen aka “Hurrikanen,” is a courageous, free spirited, full of love 5 year old boy from Cape May County who was diagnosed with cancer early this year. We know all to well what a long road it’ll be for little Kanen and his family and are honored to support this little guy in his fight.

Secondly, the For Pete’s Sake walk on March 24th. Unfortunately, we’ll be out of town this year, but this is an organization very close to our hearts. It’s an awesome day at CItizen’s Bank Park and the kids get to run the bases! If you want to join the fun, connect with Jessica, she is heading up the Tough Dawgs team again this year. For more on For Pete’s Sake, click here, you might recognize Superman in his plain clothes!

We’re also training for Broad Street Run, a wonderfilled ten miler through or favorite City of Brotherly Love. The girls are running with us this year, along with 20 or so of our best hometown posse. We seriously would be lost without this crew not to mention all the support we have showering us from coast to coast. Dean has a race bib, we’ll see how he feels. If you see him out there, hittin’ the streets – give hime a holler or a high five, and know it must be a very good day! Either way, we’ll run with him or for him, but it wouldn’t surprise me if he pulls it off again this year.

Ok- that’s my long winded story for today, and my therapy for the week. His surgeon just came out to report that they got what they needed, and he’s waking up slowly, Special Prayers and Blessings to the doctors and nurses here at Penn. Their care and passion for their work are unmatchable. And he’s awake. We are so blessed. xxN

Looks like I’m gonna’ work right up to another Gamma Knife procedure. Knife-less brain surgery. Friday. Here in Philly (thanks for the new machine!) I have a Neuro Surgeon, a Radiation Oncologist and a Physicist together in a room, and a four pinned head gear that is screwed to my head. They’ll put me in the machine, and stand on the other side of the glass. It can take a few hours. I have scars from the first procedure, the next two were not as damaging. W’ell wait and see what lucky 13 leaves, more battle wounds to wear.

The primary job – eliminate my latest brain tumor, number 13, by sending a very high dose of radiation to the tumor from several different directions…don’t move! Yikes! The machine is like all the others – loud, big and f#*$@% scary! Its been a shift for me to be ok in these machines…I can do it, but there are scars…scars on my head, that will heal but each time, life is different. Maybe I should get a tattoo on my head that says AIM HERE! or some sort of mark to indicate the point of impact. That would be good, a henna, so it’s there for a bit. Just for fun – for a bit…why not?

Sophia asked me why there was paperwork from Cleveland Clinic on my desk. The kids are sharp…we try and keep life as normal and this is what we do now (we also do tons of fun stuff) there’s work to do, treatments to go to appointments weekly. I try and present these events as a job and not get too emotional, however it can be difficult for me to handle. It is brain surgery for God’s sake and yes I have had it three times already…but you never get used to this stuff. ever.

What was in those twelve portions of by brain did I not need? They blast them with so much radiation that that part of my brain is gone! Was I using that for something? Is it something like my appendix? Something I can go without it? I have a hard time remembering names, but I’m also just getting old. 12 pieces gone, one more on the way out…what did they do? I’m working full time-top of my game, playing music, paying bills, taking out the trash. Makes one wonder…

The side effects, yea them, go ahead and challenge my balance, take my surfing away, sailing, snowboarding, and skateboarding with my girls, yea – NO.

Challenging my balance is dropping in at Ulwatus in Indonesia on a friends Campbell Brother Bonzer (thanks Mitch) he said it knew that wave, and it did. I’ll stick with that. Challenge my balance – Ha! I’ll beat you, you nasty little tumors. We’ve got Trestles to conquer again this Spring.

Nikki suggests I consider the almost thirteen sections of brain were not serving me. Maybe they held all of my bad memories, and fears, and doubts, and without them I can be free of their burden. Wouldn’t that be nice. Less burden. More room for fun. Yeah- I’ll go with that. More room for fun.