A Day Late and lots of dollars short

by | Dec 31, 2019 | 0 comments

As you know I don’t post many of these journal updates but sometimes I just need to put it down and so here I am. Holidays have whizzed by in a blur and we sit, on the eve of New Year’s Eve and I am thinking about our lives, just over a year after Will’s diagnosis.  I would love to put a positive spin on the year, I really would, but it’s near impossible.  If this post contained some sort of miracle news my sadness and anger would melt away but instead it is fueled by every single misery my son and my family has suffered these past almost 380 days.  I have been able to tilt toward the positive because that is what we do isn’t it….we fight, we stay strong and we stay hopeful.  To be fair, it was how we felt for many many months but the vital instinct to keep fighting and stay focused is waning and I am here now, not to assuage you but to to update you with the harsh reality of childhood cancer.

As many of you know, Will had started treatment again mid October.  He had a really promising response to the first round and we were able to have a week of respite over Thanksgiving – a week where we did give thanks for having our son perched up at the table (a table his Thea Nicole had lovingly decorated) with us plowing through turkey, stuffing and cranberry sauce.  It was a really lovely day, being together as a family enjoying ritual and time together that felt almost “normal”.

The Monday following Will began another cycle of treatment and was able to receive the requisite seven days of IV chemo on an outpatient basis at the south campus of Children’s Hospital and so we approached the week buoyed by Will’s practical manner and ability to plow through the side effects with nary a complaint.  Even our middle-of-the-night trip to the ER didn’t really slow us down much as Will was back at home in short order – hooked up to O2 but home.  Still fighting through pain and nausea but home.  We have become so accustomed to the highs and lows of this cancer shit show that what to many probably feel like mountains to us are now just “bumps” in the road.

Whereas I once was perhaps full of grace and inspiration I now feel like the guy in the Allstate commercial – mayhem – your worst nightmare….deliverer of news that is unsettling and seems almost unbelievable (I mean, come on… don’t really get cancer and if they do they don’t actually die of cancer, right?)  Easier to buy in to the notion that if Will just fights hard enough, is loved enough and is prayed for enough that all will be ok.  The well-intentioned battle cries have been silenced by the omnipresent roar of cancer and it’s insidious and heinous persistence.

One year to the day he was diagnosed we learned that Will’s new chemotherapy was no longer working.  The phone call, like so many others I’ve received, felt surreal but the news it delivered gutted me once again.  And once again I had to turn to my son and let him know his cancer had outsmarted the treatment despite every ounce of poison he’s taken, every day he’s muscled through the side effects, every other pill he’s had to swallow to manage all the other hideous symptoms he carries around with him, marked and pitted like the martyr he has become.

We met the next day with Will’s oncologist to talk about “options”.  We were joined by one of the fellows, Zach, who has been a steady source of brotherly comfort for Will throughout this past year. He has his own cancer story having lost his brother to blood cancer years ago and this makes him so much more tender in his presence with Will and our family.  Will was in extreme pain that day and we all agreed it better to focus on the short term goal of allowing Will to be home for Christmas while trying to better manage his more intense pain.  So off we went with the heaviness of knowing we need to make a big decision but having bought a few more days to exist in a bubble of sorts.

Coming home that day felt bittersweet – Will’s gifts for us had been wrapped and under the tree for weeks.  The rest of us slackers had a lot of work to do still to complete our Christmas tasks and so, taking a cue from our warrior, we rallied and it all came together in a somewhat organized fashion.  Christmas Eve at Stuva’s parents (Yia Yia and Pa Pou) partaking in a decades-old tradition of chili and hot dogs, Santa and the Big Fat Greek shin dig.  Christmas Day at home spent unwrapping, brunch, lounging whilst Christmas music softly played in the background.  Christmas dinner at Nicole and Mike’s with a special visit from cousin Christian.  Cancer is cruel in a thousand different ways but it does allow for a deeper appreciation for the simplicity of love and togetherness and for that I am extremely grateful.

I truly believe Will actually “willed” himself to find stamina enough to enjoy the holidays on his terms but I could tell it had taken it’s toll. By Friday we were back at Children’s for a few bags of blood and, as a testament to how intense the pain had become, Will agreed to have a home-care company take over his care for the time being.  The past handful of days have been a mad experiment that has threatened to put me over the edge but I think we may now be in a groove and have the pain pump titrated to a proper setting; the goal is to keep the pain at a “5” or less but not over do the meds whereby Will is too sedated.  It’s a tricky little dance so I don’t sit still for too long but the trade off is Will is home.  The ever present college bowl games reassuringly convincing us that the “holiday” season is not yet over, Stokeley back from puppy boot camp with dash of manners who lays on the floor next to Will soaking up the belly rubs when he can get them.

I am a day late in posting this and I have more to add but for now I will leave it at this.  If you have been moved at all by Will’s story please consider making an end-of-the-year donation to your favorite Childhood Cancer Charity.  My personal recommendation is Lolo’s Angels (Link in Ways to Help) but there are many good ones out there – my ask is that you find one that dedicates their dollars to research as it is so vitally needed.  Will remarked that it seems pediatric cancer has been forgotten and, sadly, he is correct.  Will and every other kid out there who is fighting this disease deserve so much more than they get.  Awareness is part of why I write but I also hope to inspire action. Put your money where your heart is and let those dollars fuel research for our children.  Thank you, as always, for loving our son so much….it means everything to us xoxo


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Will’s Stuff

While in treatment Will was often confined to his hospital room. In order to satisfy his creative and entrepreneurial nature he opened up a little online clothing business featuring his own designs. Soon after he began donating portions of his own proceeds to childhood cancer charities and in in this spirit we have kept the store open and ALL proceeds now go directly to WillStrong Foundation. Shop with purpose and help us help others!