by | Dec 8, 2019 | 0 comments

I really want to have something clever to say at this point, but I don’t.  This week has been tough and we are putting the finishing touches on an unexpected check-in at Children’s that underscores the reality in which we now exist.  Whereas I once was inspired to infuse my posts with more pizazz and humanity I am just going to put it down and see what comes out.

Will had a bone marrow biopsy the week before Thanksgiving break and, I’m happy to report, the results were encouraging.  Good enough for a bunch of high fives and a big sigh of relief but tempered by the knowing that “good” results only promise the chance to keep trying.  He had a significant clearing of leukemia blasts in his marrow and thus we are bolstered to repeat the same regimen in hopes that he might experience a period of no detectable disease and provide opportunity to pursue a curative treatment.

But here’s the deal – whatever the result it comes as a false prophet, outwardly in sheep’s clothing to soothe our ego’s need for conquering all but inwardly a ravenous wolf filed with insatiable hunger that will not be so easily prohibited from taking what it needs to keep proliferating.  The treatment he is enduring now is simply the first logical step in a new approach to blast his AML – the following steps are less clear at this point.  It’s just one foot in front of the other really.  See where we end up and which fork in the road gets us to the best destination.

Will started round 2 of his regimen (a combination of IV chemo along with his daily oral chemo) this past Monday.  He was given the option to receive the IV infusions on an outpatient basis and he jumped at the chance.  We had to dodge a few curveballs and our days at the hospital were longer than I had originally planned for but the benefit of being home far outweighed the extra caregiver duties that befell me.  The hardest to navigate was the increased pain as a result of the IV chemo and continues to be so.  Cancer, ever the change up artist, allowing Will to attend a Broncos game on Sunday only to overturn that victory with a full body slam to the ground less than 12 hours later.  This disease likes to keep us teetering on the edge – uneasy and unsure of what comes next.

At any rate, Mister Will and I spent the week coming and going to Children’s South – getting bags of blood, chemo, another lumbar puncture with intrathecal chemo into his spinal fluid as well as an increase in pain meds.  Bone pain is exceedingly hard to treat and has become Will’s constant companion.  He described it to his doctor as feeling like he’s getting “Nancy Kerragin-ed”  – the pain feels like he’s being beat with a metal bar…at the time he was hunched over in pain but we all met eyes and had a collective moment of reprieve in his ability to maintain his humor.  Also the fact that he’s 15 and wasn’t even born when that whole fiasco played out….I mean the kid does not miss a beat.

He spent much of the week in his special spot on the couch with his various accoutrement nearby.  Will is very weak and at times requires help to get up and around.  His appetite is not great as he has a great deal of nausea – among the accoutrement are emesis bags a plenty which, I must say, are a genius invention.  The days were punctuated with doses of meds, trips to and from Children’s, more doses of meds, central line care, preparing food that Will might want and then often discarding said food, watching “House” into the wee hours of the night because, although I’ve already seen every episode, it’s “our show” and it makes me happy to be with him in any way, shape or form possible.

We figured we could chug through the week and eventually come out the other side in one piece with a little relief from the pain for Will and a little sleep for the mama.  But cancer….you know….it had other plans for us.  I got Will settled, albeit tenuously, around midnight on Friday but he called me (thank goodness for cell phones) by 2:30am for help and by 3am it was clear he needed medical support.  He had spiked a temp which, in the cancer world, is a direct hall pass straight to the ER as well as was throwing up and having trouble breathing….I woke Stuva up to help carry Will to the car and off we went.  Every bump in the road a torture but we made it in record time (a benefit to driving across town in the dark hours of the morning) and by 4am he was being wheeled back and taken care of.  Eventually he was admitted up to the 7th floor and remained stable with the help of a little TLC from his care team, IV meds and oxygen.

I am happy to report that Mister Will is now home – back in his special spot and eating a few “Drunken Yardbirds” from Qdoba, watching “The Office” with his brother and seems relieved of some of his pain. I have no idea if this nirvana will last but for now it is lovely.  We will go back to Children’s in the morning so he can be evaluated but the IV chemo is, for now, in the rearview mirror and with it, we hope, at least some of the most intense pain and nausea.

Trauma can look like being afraid to count your blessings and there are times when I feel this acutely.  We live in a state of uncertainty, withdrawn somewhat from the hustling and bustling of the season, hesitant to get attached to any particular plan.  Our nervous systems are on auto drive, our adrenals are fatigued.  We look at our beautiful boy and we are both amazed at his strength and stricken by the state of his existence.  Whereas we used to watch him run the football into the end zone we now watch him struggle to walk up the stairs….his once sturdy, muscular body atrophied as an 80-year old man’s.  The tender nape of his neck, his now curly and fluffy hair sweeping upwards out of his ever present baseball cap.  It pierces the heart so….

Trauma can also remind us that counting one’s blessings is a powerful practice and allows an opportunity to restore a bit of balance to a situation that seems to be heading in the wrong direction. And thus I count my blessings.  Among them that Will went toe to toe with his doctor today and busted out of the hospital a day early (the attending doc had not yet had the pleasure of negotiating with Will and tried her damndest while the nurses and Stuva popped some popcorn and settled in for some entertainment….needless to say, he’s home:)

We don’t know what tomorrow will bring but we do know that our guy continues to fight.  We do know that we have a great community of support and we feel so grateful for it.  We thank you all for your continued love and prayers and thank you for standing with us always.  Thank you for your acts of kindness big and small – there are times when we start to unravel but your kindness knits us back together time and time again.  And when we count our blessings you are all foremost among them:)


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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!