I am sitting, about to start this journal and not really sure where to start or what to say when I glance up and see a sign.  It is one of many, lovingly made by a group of Will’s friends, and it says “WE LOVE WILL”.  And that is just about the perfect way to start this update….because we really really do LOVE Will and that love is what gets us up in the morning and what allows us to lay our heads for rest at night knowing that love is what will get us through.

It is not a spot I would have ever thought to find myself in – spending my days taking care of my youngest son as cancer eats away at his body.  Trying to support my other two boys while they move through this experience shouldering their own sadness, grief and fear but with a sensitivity and lightness that allows them to comfort their brother and their parents at the same time.  The arc of growing up far too accelerated yet the manner in which they choose to be present buttressing the foundation of the men they are becoming.  I’d like them to be able to stay “kids” for so much longer but cancer has stolen that luxury; we don’t always get to choose our path but they display a maturity and grace that reassures me the lasting mark here will be one of growth and expansion even in the face of such loss.

Meantime we have had to wrap our minds around the reality we are no longer treating disease but simply managing symptoms.  The protocols, rules and regulations of treatment that once provided a framework to our collective existence are gone.  Whereas, before, if Will spiked a fever at home we knew there would be a requisite trip to the ER.  We knew it was then reasonable for the team to draw cultures and start antibiotics.  We knew if his condition escalated he would then be taken to the PICU until stable.  Now, should a complication arise, the question of “what to do” lingers in the shadows like an unwanted invitation to a game of chicken with Will’s life….a reminder that we are not questioning “if” but rather “when”.  We have had to draw a line in the sand, we have had to fill out forms to protect us in case something goes down at home and we do nothing.  I write somewhat obtusely because these considerations are disturbing, especially when thinking about a child….my child.  But I have been told the authorities know where to look for the particular “form” and so it rests in a ziplock bag in my freezer lest there is any question of our intent.

These days Will’s bone marrow is churning out more and more leukemia and there will be a time soon when his disease burden becomes so heavy his organs will start to shut down.  His white blood count is climbing and his platelets are dropping, tissues dotted with blood accumulating in the trash.  At some point the bleeding will increase as his marrow stops making platelets altogether.  His feet and ankles are swollen; his body, once a vibrant and beautiful machine, is becoming less and less efficient.  He relies on oxygen most of the time to keep his levels up and he relies on an ever-increasing amount of dilaudid and versed to keep him feeling somewhat comfortable.

But still he pushes through each day, doing his best to get up and down the stairs when needed.  Playing video games and binge watching Star Wars movies with his brothers, making jokes at his own expense, trying to keep up with the basic routines of the day including daily care such as flossing (I mean, seriously??  I have had the same dental floss container in my drawer for the past 3 years, lol) and combing his hair.  But he is getting weaker.  His once muscular body is shrinking quickly, ribs and collarbones delicately outline the contours of his body.  He fights to stay awake throughout the day, almost like the toddler who stubbornly proclaims they are NOT tired, trying to stay up a little later so as not to miss out on the fun.  But he is tired and I see a shift in his energy.  These are the signs I have been told to look for.

But all the while there is love and so much of it.  We love him for so many reasons and for no reason at all. We love him because despite all he has been through he has not expressed a hint of bitterness. We love him because when new members of our care team come to the house to adjust his pain pump he perkily sits up and politely introduces himself  “Oh hi, I’m Will” in the sweetest of voices.  We love him because he has developed an affinity for crepes filled with Nutella, strawberries and shredded coconut and so I have become adept at whipping up crepes morning, noon and night and, let’s face it, crepes make everything better!

And when I look again at the board his friends made they love Will because, in their words,….”he always finds the good in people”, “he always brings joy and lights up the room with his amazing laugh”, “he was always there for me and has shown me how to keep fighting no matter how hard it gets” and “he’s my other half and has always been.  I love him so much and I always will”…..

Will is so so loved and we will love him every single day he has left on this earthly plane and when he transcends us and moves on we will continue to love him with every fiber of our being.  And, really, isn’t that all we can ask for….a lifetime of love, even if Will’s lifetime really is not long enough.  This is hard, incredibly hard, and I know it will get harder still.

But for the time being we try to stay anchored in the moment and continue to follow Mister Will’s lead. As another of his friends wrote, “he is always positive and never wants you to feel sad.”  So that is the spirit in which we try to move through each day right now and we encourage you all to do the same.  It is sad, of course it is, but it is also beautiful and we are intensely grateful for each moment we have with our warrior Will.