Room with a View

by | Oct 30, 2019 | 0 comments

Still here, not surprisingly, but feeling cozy and well taken care of in our home away from home.  Apparently winter decided to make an early and emphatic debut and for added measure is going to stick around for one more day.  The view is reminiscent of the many winter days we spent here during Will’s first battle with AML, icy and snow covered, the frigid air creating giants plumes of smoke from the rooftop vents at Children’s and it’s hard to believe that we are back at it again.

Will was admitted last Thursday and had his obligatory bone marrow biopsy and lumbar puncture to start off his visit – the biopsy to get his blast percentage as a baseline and the LP to administer chemo into his spinal fluid as he has CNF involvement once again.  We then moved into our room and he started his treatment regimen – one is an oral chemo given for 28 days and the other an IV chemo given for 7 days.  And so we start with the hatch marks like we’re doing time again and all told this is now bringing us to a collective 6 months inpatient.  That’s a lot of hatch marks.

The good news is that this chemo regimen should be gentler and there is a chance Will can do some of it outpatient.  The bad news, because whenever cancer is involved there has got to be a reckoning, “gentle” is a relative term and with aggressive blood cancers “gentle” can still pack a punch.  Will not only got punched, he got flattened and what was supposed to be a pretty uneventful day cranked up within a few short hours of being admitted.

Walking back into Children’s for admittance was certainly a bit of trigger for Will and I.  The lobby, bustling with nurses, doctors, clinicians, patients, family members and volunteers, at first glance looks simply cheerful and busy.  However it verges on frenetic and once you pause and gaze upon all the children being pulled in their red wagons or pushed in special wheelchairs with IV poles clanking nearby, you just want to keep walking and arrive quickly to the safe haven of the 7th floor.  There is an unspoken comfort of being buzzed through the secure double doors of 7 East and finding your quiet room, hermetically sealed, with it’s familiar layout.  Of the ritual of unpacking and getting set up for the upcoming days.  There is a comfort of the familiar faces of your care team; and although they are happy to see us, the undercurrent of their happiness is diminished by the reason why.

Will automatically got settled (his body knows this place so well) and I sensed he was feeling at ease, confident and ready to start treatment.  Cancer, however, likes to remind you not to get too comfortable, it likes to remind you who is really in charge and Will quickly went from being propped up in bed enjoying being waited on by yours truly and his nurse to being evaluated by a team of docs to be taken down to the PICU.  He spiked a fever of 41.1 C, his pressures were all over the place from super low to super high, he was writhing in pain, having a bloody nose and then throwing up blood…I mean, the works!  Fortunately the trip to the PICU was diverted as they were able to get him stable enough to stay put – Will wins that round and cancer can suck it.

The other issue with Will’s diagnosis is his Diabetes Inspidus, caused by damage to the pituitary from the AML.  It is well controlled but it flared up in a major way – in part due to the fluids they flush with upon induction chemo to prevent Tumor Lysis Syndrome – this can be a dangerous complication when treatment is started and the cancer cells die quickly and are released into the body.  Long story short, the kid starting peeing and then subsequently drinking gallons upon gallons of liquid.  By the time it was sorted we had spent 24 hours straight emptying urinals and fetching him drinks and he consuming and then expelling said drinks at a rate that was mind boggling.  The silver lining was I did have a good laugh thinking back at Craig, Will’s night nurse (who is the MOST kind-hearted soul and a childhood cancer survivor himself) literally running around the entire night trying to help this boy out while tracking “In’s” and “Out’s” most diligently which probably just ended up looking like a mad scribble out of “A Beautiful Mind”.  Lol.

Since then it’s just been days of trying to mitigate pain and nausea and a few laughs and a lot of quiet.  When we were here before we brought things from home to jazz up the place, we played board games and walked the halls – we don’t do that now.  This feels very different – I told someone it’s like putting your hand in the fire, being burnt and then being asked to do it again.  Mister Will has already served his time, we are veterans who have just fought this fight and our battles wounds were just beginning to heal.  We’re willing to do it again but our steely demeanor is going to be harder to wear down this time around.

Will did have a visit from his cousins along with his brother Jack and from what I gather it was a good visit and a good day.  The bright side is always there, you just have to know when to stop and let it shine for a moment.

Another bright spot is my middle boy, Jackie, turns 17 tomorrow and I got him a SNOW DAY for his birthday!  I’m super proud of this kid who is turning into a man before my eyes.  But looks can be deceiving and he’s still just a kid who I really hope I can give a big birthday hug to very soon!

So once again I have much to ponder as I look out this room with a high above view.  I sometimes feel like Rapunzel and wish to let down my hair so that my incredible tribe of friends and family can come on up and remind us that we are not alone.  But the business that is happening up here is a transaction between Will and his AML at this point and he desires no distraction.

We know you all are still there for us, cheering us on and willing to do whatever is needed, and we thank you for that.  In the meantime, stay tuned for a few ways you can support the cancer community in honor of Will!  And with that this tired mama is signing out so have a peaceful night and keep your eyes out for the silver lining, it’s always there:)


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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!