summer

It’s been a long several days here in the window.
not exactly how we planned on starting our summer vacation.

One thing this horrible disease has given us over the last few years is a perspective on what’s important to us individually and as a family. Time by the water is IT for us and it’s a hard expectation to drop, that well get another summer at the beach, life as normal. Surfing, sailing, clamming in Chappy, it all seems pretty difficult right now.

Dean is fighting off some nasty pneumonia this week – not want you want to be doing the first week of summer vacation. We’re in good hands here at Penn, the best our city of brotherly love has to offer. That said – it’s been a week of first experiences too -ambulance rides, extended hospital stays and trying to navigate the waters of the next several weeks. The girls have been transitioning from school to summer with a brief stop at soccer camp for G. Their sailing season has started and what is typically a challenging week under normal circumstances, has proven to be even more difficult with the two of us grounded here in Philly, held hostage by IV antibiotics, shortness of breath and recycled air. Thank goodness for family and friends who know just what you need before you even do – thanks everyone for the Animo deliveries, 5 star takeout, fresh baked cookies, soccer camp runs, sailing help and prayers. Fortunately, Superman is feeling relatively well, considering. It’s incredible to look at the scans of Dean’s lungs, and see the war going on in there. It’s hard to figure how he’s even getting any oxygen, and how theres no fever and no coughing. Just another super power, his ability to put mind over matter. It’s a lesson we could all take from Dean’s fight, how keeping strong in your mind and your intention. It’s proof that our thoughts can carry a shit ton more weight than we think.

So thats where we are at 4:44 on Wednesday morning – with the INTENTION of getting well enough to bust out of here and get back to the beach, toes in the sand with the waves crashing in – ok we live in New Jersey – so maybe waves rippling in. We’re about to head into what we refer to here as the season of “summer flats” where you stand by watching the swell forecast with the hopes of catching that storm that brings SOMETHING rideable your way. Not ideal for the big boys, but perfect for the kids and for the stand up paddles. We’ll sit at Waverly Beach and watch all the girls goof off in the water, create those special bonds with their summertime friends and practice their cartwheels. We’ll rest, and recuperate while we live in the window of our very favorite season at home.

We hope you’ll do something memorable this summer too- take some time off, get your own feet in the sand. Life goes by quick, and kids grow up fast. Stop and smell the roses, live a little, love bigger, and those dreams? those goals? they’re happening now. LIFE is happening now. Grab it, chase it and create the life you want to live, don’t wait! DO IT NOW DO IT NOW DO IT NOW.

Sorry its been a while- we’ve been really busy living it up the past few months and trying to squeeze every bit of loving fun in that we can! We’ve come to refer to it as living in the window. The stretch of life between Dean’s scans. The small break in reality that we give ourselves to counter the stress of dealing with this crazy disease. The most recent window has been filled with soccer games and sailboats, band practice and birthdays, living in the moment and loving even bigger. We’ve been so blessed with opportunities to do and see and to share the world with our girls.The transition form New York back to Philly for treatment was bittersweet, although much less taxing on the family, its never good when the medicine stops working. It typically means a few weeks of scrambling to find a new plan, lots of collaboration of the nurses and docs and inevitably a new schedule to get used to.

Which brings us to the latest update-

We counted tumors this week- 22 in all. Sounds like a lot for sure. Even still, this comes as good news. All 22 pesky tumors are contained to Deans lungs and haven’t moved anywhere else. If you saw him sing a few weeks ago- you’d never believe it. He is starting to feel a bit fatigued at times, and squeezing in the fun takes a bit more effort, but he’s still quick to paddle out in the ocean, launch the boat w the girls, and dream up the next big adventure. Work has been going fairly well, and his team at Boeing is so tremendously supportive, but with the latest developments and the transition to a new protocol, it looks like some time off is in the cards.

Well take the next few weeks to get set on a new trial, possibly taking is back to Sloane or Duke, refill our tanks for this next round of treatments and conquer the lists of things we want to do this summer. Something we suggest everyone do- making the list, not quite as far reaching as a bucket list, more like things you want to do but don’t make the time. Dean’s has sailing the sunfish in a race, Sophia will be working on getting barreled (if the summer flats don’t hit too soon!) Gianna wants to have a friend stay with us at the beach for two nights, and I’ll be making blueberry jam. The lists go on, insuring that we make the most out of our time this summer, and that everyone gets to share in the fun!
Well be spending our time in Ocean City, and taking a few road trips up the coast visiting with friends, and seeing the sights.

Please continue to pray for Dean and add to list his mother, Angela Hawes. She is currently in the ICU at Our Lady of Lourdes after complications from her recent knee replacement. While she is in stable condition, she has a long road ahead. Thanks for all your good thoughts and kind words! They mean the world! Hope you have a safe and Happy 4th- make sure to catch some fireworks- they always make us smile 🙂

xxo NDG&S

LIVING IN THE WINDOW

hey- this wasn’t in the brochure!

Summer Lovin’