There’s No Place Like Home

by | Jun 1, 2019 | 0 comments

Time has a funny way of being somewhat flexible and malleable in that some days seem to go faster than others.  Days turn into weeks which turn into months and often we find ourselves scratching our heads wondering where did the time go?  These past months have been mostly a blur with the exception of certain moments, good and bad, that I can still return to with a laser like focus that tells me I won’t soon forget them and they will comprise my dreams and nightmares for months to come.  This past month, in particular, is what I focus on now as we have been able to step out of the hospital environment for the first time in five and a half months.  On May 28th, Day +25 of bone marrow transplant, Mister Will walked out of Colorado Children’s Hospital…..hallelujah!!!!!

As I sit and write, with Will sitting just an arms reach away on our couch, I am struck by just how much this boy has been through.  He is nestled into the crook of the couch with a cozy blanket, watching a show on his phone.  He has taken his anti-rejection meds, the most important ones….the ones that keep him alive, and we’ve passed the critical time whereby he’s kept them down long enough before getting sick so we don’t have to worry about re-dosing.  He has another handful of meds to get through before too long and I watch him glance at the cup, trying to will his stomach to calm down so he can start the process….only to do it all over again this evening.  He wears a ball cap to preserve body heat even in this warm weather and has lost all the hair on his arms and legs; gone also are the vestiges of eyelashes and eyebrows that so stubbornly hung on for most of treatment.  In some ways he resembles a new born baby and the precautions we must now take are reflective of his precarious state.

We keep all windows and doors closed, if he goes outside Will dons his special mask that filters allergens and molds.  Prior to discharge we hustled around sanitizing and steam cleaning to get the house ready for his homecoming as if we were Megan and Harry bringing Prince Archie home for the first time (of course without the benefit of the royal staff to accomplish these duties). We bathed the dog, got rid of any plants and flowers that hadn’t already succumbed to neglect, purchased copious amounts of disinfecting sprays and wipes.  We have a list of foods and activities that are verboten for the time being and we are getting used to the very simple life of being at home with, for all intents and purpose, a newborn baby!!!

The road we have heretofore traveled has been full of twists and turns, our lives surreal. I feel as if we’ve been playing roles in The Wonderful Wizard of Oz, together on a journey we didn’t ask for and initiated seemingly out of nowhere.  Spinning out of control and transported to another dimension and functioning as best we could amidst the various deterrents to the Emerald City or, in our case, an effective treatment for Will.  We are a motley crew walking this Yellow Brick Road (fitting in that “gold” is the color of pediatric cancer) which is paved with big ups and big downs.  A day where Will could eat and do laps bringing us one step forward.  A wonky blood test takes us two steps back.  Good bone marrow results a giant leap ahead, a fungal infection that threatened to derail the transplant a forceful shove back to square one.  The Wicked Witch of the West always lurking around the corner in her attempt to destroy us.  Winged monkeys playing ironic tricks and trying to dismantle the plan and keep us living in fear.  Losing our courage, finding our courage.  Keeping hope and faith in our hearts and our own personal Toto (aka Stokeley the puppy) rescuing us all from dark moments and ultimately saving the day by pulling away the curtain to reveal that life really is just love and wonder and being in the moment.

And just like in the movie, we had a Glinda of sorts in the faith we found along the way.  Before we could complete this part of our journey we had to trust in the good hands that guide us and watch over us.  And He came, in the most unlikely of times, to gently nudge us in the proper direction but to allow us to know fear and to question why and to notice the little signs that stoked our faith and allowed us to stay open.  Some days it was being cared for by a favorite nurse, or meeting a provider who had themselves had a bone marrow transplant years ago.  Other days it was the way the sun would shine through the clouds like an ethereal message to remind us that we are loved and have not been forgotten.  That Will is stronger than we could possibly imagine and that he would, eventually, be able to come home and in the way we had ALL prayed for; with the chance to continue his fight against AML and the hope for a healthy and abundant life ahead.

And so we gathered last week – family, nurses, physicians, oncologists alike – and we cheered as Will did his official “walk out” and rang the Warrior Bell on 7 East.  We had day nurses who came in on their day off and night nurses who set an early alarm to help celebrate.  The du rags were worn proudly (did you know there is a “du rag” store close to Children’s?) as a nod to Will’s topper of choice and the tears were flowing.  As Stuva said, it has been a months-long love fest and these amazing humans have become like family.  They have been there through thick and thin, compassionately and expertly, taking care of our son and, by extension, us.

The job is now ours and we are trying to arrange the various home cares into some semblance of a schedule.  For the next weeks and months we will have many clinic visits as Will requires constant labs and infusions.  He will have a bone marrow biopsy on Tuesday, the results of which will give us information about any lasting evidence of disease as well what percentage of Stathi’s cells have taken over.  The hope is that there is no MRD (minimal residual disease) and that chimerism (engraftment analysis) is high.

There will be much anxiety surrounding the impending results but we continue to savor what we have right now, today, and what we have is beautiful.  We have our Will; he is not attached to a pole of pumps for all the IV meds he’s needed, he can go outside with his puppy and he can wake up in his own bed.  We are falling into the rhythm of chores and grocery store runs and home-cooked meals.  We are all under one roof, sometimes annoyingly so…lol.  It took a lot more than a click of the heels, but we are HOME!!!!


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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!