Day Plus 74: Life is Bruta-ful

by Jana

It has been just over a week since Oliver came home from a three week stint at Primary Children's Hospital for graft vs. host disease ("GVHD") of the GI track. The week before he was discharged was a memorably good one.  Oliver went from not being allowed to eat anything for days while being ravenously hungry from high-dose steroids to finally being able to zealously eat such delicacies as plain tuna sandwiches and oatmeal with syrup.  That same week Oliver's Navy-medic uncle visited him after a long deployment and taught him how to play Settlers of Catan, sailor-style.  He also lost two teeth in two days, which prompted visits from Justin The CNA Tooth- Fairy.   That week I successfully executed the fake pooh prank on the unsuspecting good natured Dr. Boyer that Oliver and I had conceived of way back on his BMT birthday.
Oliver hanging out with his pod mate,
Sarah, on the cancer unit.

 Oliver had been feeling well enough to roam the halls and immerse himself in the quirky, lovely 24/7 social world of the Primary Children's fourth floor cancer unit, made up of fun, endlessly patient heart-of-gold staff; unbelievably resilient nerf-gun/water syringe toting, cozy cab/wiggle rider driving, game playing kids; guitar-strumming, math-teaching calming volunteers; and grateful, exhausted, slightly drunk looking caregivers. It is a world filled with crazy antics, unbelievable heart ache, late night chats, tender mercies, wailing, controlled chaos, and joy.

When Oliver was discharged this time around, we were more unsettled than usual. I think it was for many reasons, including Oliver's trend of declining platelet counts coupled with our denied request for a bone marrow biopsy, improved but troubling CT lung scans, inability to achieve therapeutic, non toxic levels of his immune suppressant drug after
Uncle Ian!
well more than one full month of trying, unnerving side effects of high-dose steroids and a bunch of other generalized and specific concerns. This last week just felt markedly off with so many conflicting emotions and me allowing fear to win over faith more than once.

While dropping off cupcakes Oliver had made for staff at Rosecrest Elementary last week, I ran into the mother of one of Oliver's friends who was recently diagnosed with juvenile diabetes. We talked about our strong, miraculous children and what a gift it is to be their parents. We also talked about just how hard life is and how painful, exhausting and just plain scary it is to be a parent. Okay, I went on about that last part a lot longer than she did, while she listened. She said something that I thought kind of summed up how I was feeling about life. She said lately she has been referring to life as bruta-ful. Beautiful and brutal all at the same time.

I thought about that yesterday as I was waiting for Oliver as he was finally undergoing a much needed bone marrow biopsy. I thought about that last night after Dr. Harris called to say he had personally looked at a preliminary slide from the biopsy and saw some concerning cells that could possibly indicate relapse. I am thinking about that right now as I sit waiting for more conclusive results while trying to remember that we can't control the things that make our lives brutal, just how we chose to deal with those things. And that overall, say what you will about life, it is still beautiful.

One of Primary Children's best kept secrets: Justin the Tooth-Fairy.  Just in case the real tooth-fairy
gets lost and you need a back up. 

Spencer the music therapist teaching Oliver to play the xylophone.

A fierce game of Uno Attack with Mariah the brainy and alleged volcano-making nurse, other staff, Oliver and parents sometime after 11 pm one night.
A classy candlelit Tibbitts family fall dinner.  Trader Joe's spice cider and . . . cornbread hotdog muffins with ketchup.

Oliver's buddy, Tanner, repurposing a chemo glove for a paw. 
A thoughtful, handmade gift from Irish the nurse to Oliver, happily re-gifted by his
mom to a very surprised Dr. Boyer one day during rounds.

Oliver teaching Rachel the nurse how to crochet a line.  Oliver says she was pretty good. 
Oliver shepherding his little sister at home.

Popular Posts