This Post Has No Name…..

by | Jun 7, 2019 | 0 comments

Just a simple post to update our people on the latest with our boy, Will-I-Am, and his sidekick, Stokeley.  Now home we’ve been told to take it slow and so embraced the pace in our clumsy and slap happy ways. The step back into reality has been somewhat awkward but very awesome.  Oh joy to sleep in our own beds and drink our fresh-brewed coffee in the morning!!!!  It really is the little things.  And the big bros relaxing into summer; the obligations of school and living a patchwork life of parents coming and going from the hospital sliding off their backs…their burden of reading our expressions eased a bit.

Our days since have revolved around the business of nausea mitigation, medicine taking and clinic visits.  When Will’s up for it, Stokeley comes to hang and they play and take gentle walks around the cul-de-sac, little highlights in his days as he creates more distance from transplant day.  Slowly and steadily learning to live again but with a tender hesitation knowing there is more to come – there is no simple dusting off of the palms now that the work is complete.  There is still much to be done…..

He had a bone marrow biopsy and lumbar puncture this Tuesday and I am thrilled to report the results thus far are giving us great hope that all is going exceedingly well.  His marrow is evaluated several ways and for several things.  Some of it is looked at under the microscope to determine the morphology (the character if you will) of the marrow.  Some of it is sent to a lab in Seattle to determine the MRD (minimal residual disease, tested down to the 1000th percentage point) and also for chimerism (how much of Stathi’s cells vs. Will’s cells are present).  It’s the info that will either support what we see with our own eyes (that Will looks good!!!) or cause the team to go back to the drawing board.

Amazingly and miraculously MRD is negative (no sign of leukemia) and the morphology is beautiful and healthy.  Will’s team has witnessed much over the years but if I had to guess, I’d say this boy has shocked them all.  In the pediatric world providers are great collaborators and it has been all hands on deck from the start – we have been on a mighty journey in a vessel that has been expertly steered toward this moment in time. We have a ways togo still but the ride has steadied a bit and it feels the waves have slowed.  We are all enjoying a collective sigh of relief and whooping a hell yeah!!!!  Celebrating the milestone….this is what we do:)

If you’ve kept up with my journal entries you’ve likely gathered that Will’s diagnosis and prognosis were terrifying.  There were times when we really were just throwing up Hail Marys and hoping for the best.  Our wait for the results of this latest biopsy was a jumble of prayer, distraction and steeling ourselves for numbers that might not be in Will’s favor.  But Lo, He is with us and we are here, stunned and grateful.  We expect that chimerism is also in Will’s favor and will get confirmation next week.  Stathi’s cells seem to have navigated their way to all the nooks and crannies of Will’s marrow and we pray that they continue to do their good work for eternity.

I am writing as a mother who knows too much but will spare you all the tiny weight I still carry in my heart.  It is neither productive nor important today.  If you care to educate yourself, I’d advise doing research on AML as “cure” can be quite elusive and hard won but withdraw quickly and rejoin the party because ultimately isn’t that what life is all about; knowing that it holds both dark and light and that we are promised only these moments right here right now.  And right here right now we are celebrating…celebrating milestones, celebrating Will and the power of brotherly love, celebrating modern medicine and Dr. Jesus.  Yep, I said it!!!!

I hope this finds you with your own reason to celebrate.  I hope this finds you wherever you are tonite, feeling whatever you are feeling and gives you a nudge if you need it.  As always, we send our love to you all xoxo

Tune me in to the wild side of life
I’m an innocent young child sharp as a knife
Take me to the garretts where the artists have died
Show me the courtrooms where the judges have lied
Let me drink deeply from the water and the wine
Light colored candles in dark dreary mines
Look in the mirror and stare at myself
And wonder if that’s really me on the shelf
And each day I learn just a little bit more
I don’t know why but I do know what for
If we’re all going somewhere let’s get there soon
Oh this song’s got no title just words and a tune
Take me down alleys where the murders are done
In a vast high powered rocket to the core of the sun
Want to read books in the studies of men
Born on the breeze and die on the wind
If I was an artist who paints with his eyes
I’d study my subject and silently cry
Cry for the darkness to come down on me
For confusion to carry on turning the wheel
-Elton John and Bernie Taupin


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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!