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"New normal"

Good Morning Friends,


It’s us, your long lost internet family who’s chronicled adventures through pediatric cancer you’ve been following.


Apologies for the sparse communications as of late…we’ve just, well, we’ve been living life. Life without starting every day out by pulling into the garage parking at Children’s Hospital. Life with daily port access, blood draws, invasive scans, treatments and transfusions. A life where each day begins with our sweet little Emmy opening her eyes to the world, putting her feet on the ground and getting to do what Emmy wants to do, within reason of course. A two and a half year old with total free reign and no boundaries, circumstances notwithstanding, is destined for disaster. Can you imagine the nutritional choices she’d make?


After we completed her last scans back in April and knew that our medical obligations were complete for at least a few months, we went a bit off the grid. First, we took our first family camping trip out to Canyonlands National Park in Utah for a long weekend of soaking up the sun and playing in the dirt. Seeing our girl covered head to toe in fine desert dust, mud smeared across her forehead like a dirty little commando, was really something to behold. We spent the last two years going to great lengths to ensure that she stay as clean as possible and now all of the sudden, seeing her looking like Pigpen was a gratifying sight indeed. Speaking of gratification, the squeals of delight that came out of our filthy young explorer while she threw fist fulls of dirt skyward, echoed off those ancient canyon walls like nothing before it, startling all manner of spirits and animals alike.


Since returning from our desert adventure, we’ve settled into something that some might describe as a “normal” routine. Getting to wake up in our house each breaking morning, tucked away in this sleepy little mountain valley, is a real treat. For awhile there, every time we did get to return home, it always felt like we were staying in someone else’s VRBO. It even smelled like a vacation house. You know that smell of a place that sits vacant just long enough to get that slightly musty aroma? That always reminds me of someone’s lightly used leisure residence, which in my youth would mean that we’ve arrived on vacation, wherever the destination. In similar fashion, that smell invaded our olfactory senses each time we crossed the entry threshold, triggering those old memories. In a way it was fitting and made it feel more like a vacation from the grind as opposed to just getting to come home every once in a awhile.


Since being home it has felt like we are on some extended vacation from our other lives. Even though the VRBO smell has faded and now the bouquet is just our own, the sentiment has lingered. To have been engaged so deeply for so long with a world that has such high stakes is downright exhausting and we were in need of some distance from it. So this little family has been doing just that. Not talking about all the medications Emmy needs to take each morning; not constantly looking at the calendar filled to the brim with appointments and to-do’s; not living in this land of constant worry, even though it is only a temporary reprieve.


Today marks three whole months since Emmy underwent the full battery of scans, showing us those great (negative) results we all love. It also marks three months since she had her last chemotherapy treatment, ending an 85 week run, often five days a week. For our little girl, this has her feeling better than she has ever been able to feel in her young life, ever, and quite literally from the top down: her head has transformed from a shiny (but beautiful) pool cue ball into this thick head of little girl hair. What color you ask? Blonde in the sunlight, dark in bath, sometimes speckled with an array of colors depending on the ratio of foreign objects to actual hair. It is often sticky, the same maple syrup that adorned her morning waffle now being repurposed to style her mop. Sometimes it is even stiff, large sections holding firm against gravity. Like the rings of a tree, the big spike sticking out of the side of her head giving a timeline of the day; 8:01a (Syrup and butter base) 10:30a (chunks of play dough in a nice color variety with a good helping of black labrador hair) 12:14p (mandarin orange juice and a dash of mayo that escaped a turkey and chedda) 4:06p (milk crusted in a streak from nap time drool) 4:17p (dog kiss slobber) 5:37 (final dusting of sand and dirt before an often forced bath time where the clock resets)


What today’s calendar also shows is an 8:45a appointment at Children’s Hospital for the full set of scans once again. So that means we’ve started today NPO (nil per os - aka: nothing by the mouth) once again. Things have a come a long way on that front though. Two plus years ago when we began this process, she was a little baby, just five months old. Back then, she was still pretty close minded on the culinary front, leaving herself with milk as the 24/7 meal choice. Taking bottles away from an exasperated and hungry baby never yields great results. They get loud and stay loud, particularly this little siren. Today, things are (so thankfully) much different. She is content to sit on the hotel room bed, watching Alice in Wonderland (1951 Disney version) and only occasionally shooting off sad and pained cries of, “Daddy, soooo hungry!” in my general direction.


So here we are. Facing down another test result that could drastically alter the direction our lives are taking, again. This part doesn’t get any easier, no matter how you approach it or how many times you are forced to go through it. It just sucks.


What we do know is that over the course of the last year, after getting a bad result from these same scans, we hit back with everything we had. We packed up our family, moved across the country in order to be right next to the best of the very best. She went through an intense period of cutting edge proton radiation treatments, 28 to be precise, all while still getting often daily chemo treatments. After months of living in Boston we moved back across the country to another different city, making our temporary home at Brent’s Place while chemo treatments (and transfusions) continued daily for many, many months. What all that means for us is that we know we have done everything we could have done for our daughter during the last year. And because of it, she both looks and feels amazing. This gives us a whole lot of reasons to say that she is going to be just fine; a singing, dancing, smiling, jumping, laughing and maniacally grinning body of evidence right here in front of us.


And if not, well ..........we will just cross that bridge if we come to it. We will cross it together as our family does: heads high, holding hands and ready to face whatever may come on this crazy journey of ours.


We thank you for being here on it with us. We are so fortunate to have such a steady, loving and supportive group of wonderful people right behind us. Appreciate you.


Talk soon…

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