Will Maniatis Will Maniatis

First post: Dec 24, 2018 Latest post: Nov 30, 2022
As you may already know, Will was diagnosed with Leukemia on Tuesday, December 18th.  Since then we have learned much more about the tricky nature of Leukemia and although we have a clearer understanding of Will's diagnosis we are still waiting on the final layers. The official diagnosis is Acute Myeloid Leukemia (AML).  Under AML there are 10 different "types" and it seems his is more rare.  Will is also dealing with a diagnosis of Central Diabetes Insipidus (CDI) caused by damage to the pituitary from the Leukemia.  Because of the double whammy of AML and CDI Will is being treated by a team of oncologists as well as a team of endocrinologists.

Will had surgery on Thursday to insert his Broviac (port for chemotherapy) and to do the bone marrow draw for biopsy - he also had a spinal tap to test for leukemia in spinal fluid.  He has been an absolute trooper though all of this despite the diagnoses and the pain.  He has been 100% involved and asking really smart questions of all of his nurses and specialists.  It is so cool to see his independence shine and the team has started a "Will's Quotes" board because they really are so damn funny.  Having said that, he is struggling with keeping his spirits up - we hope that once the pain starts to diminish his mental outlook will get better, too.

We are taking this one day at a time; it's really all we can do as the specifics of the diagnosis are still unfolding. Will has processed each tough update on his cancer with incredible maturity which helps Stuva and me stay focused and positive. He started Chemotherapy on Friday and, although we don't know exactly what to expect because there are still results forthcoming, it will be a long haul with the very real possibility of a Bone Marrow Transplant - I won't go into that now but it's on the table and it changes the treatment plan drastically.  For now, we are under incredible care at Children's Hospital in Aurora and will be here at least for the next month.  Depending on treatment plan it could be about 6-7 months in the hospital or up to 18 months in the hospital.  A marathon no matter but one we will complete step by step.  

Thank you all so much for your outpouring of support; we feel your love and are buoyed up by knowing that we are not in this alone.  We have experienced more pain in the past handful of days than I thought possible but at the same time we have felt more love and joy in that same short amount of time and we owe this to Will and our incredible web of support.  We love you all and we feel the same in return:)

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