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Billy Nestos - Journal

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Posted 2017-02-22T16:57:41Z

He who has a why can endure any how. Friedrich Nietzsche

Dearest Billy Boy...

This morning we wake up knowing you WILL achieve remission in your battle with lymphoma.  The joy we shared yesterday as a family is unmatched by any other moments we have ever known and we will savor it forever. I know how much you have appreciated the love that has surrounded you during this incredibly challenging time in your life, Billy Boy, but this post isn't about our blessed family, it is about YOU.  I can't walk into the next round without acknowledging the approach you took in fighting this battle. Your strength and courage were your superpowers...and you relied on them hour by hour to get you over each and every hurdle that was set before you.  Your willingness to embrace every single appointment, poke and treatment with such grace and tenacity was awe-inspiring.  No matter what obstacle any given day brought your tirelessly and quietly conquered it with a resolve I'm not sure even I could rally in your position.  I want you to know how proud we are of you, Billy Boy.  You have proven to be a great and determined and inexhaustible warrior.  You have proven that your BEST will always be enough to deliver you WHEREVER you want to go.  YOU, together with God's grace and glory, have triumphed over your illness.  I will always remember your confidence, Billy, from the very moment you learned of your diagnosis.  You declared you would BEAT this cancer with such conviction that it took my breath away.  I remember feeling speechless in that moment and then a rush of relief for your faith washed over me. You may not have known it at the time, Billy, but YOU actually comforted ME in that moment with your unmistakable bravery.  For that, and so much more, my boy, I want to express my thankfulness and love for you.  I want you to know how very proud we are of you and how much we love, treasure and adore you.  We know God's purpose for this journey is still unknown...but I have a strong feeling that, whenever it is revealed to us, we will look back on this time knowing you did something very good, Billy Boy, something very, very good.  We, as your family, will forever be in your debt for carrying this for us...and we look to your tomorrows with peace and the great hope that your life is filled with faith and trust in God, the security of your family, and a gratitude for all things ALWAYS.  God Bless you, Billy Boy, forever and ever...AMEN.[...]

Posted 2017-02-13T05:09:55Z


Sunday, February 12

I realize this post will be out of sequence as my last one dates back to mid-January when Billy was about to begin Round 2.
My reason for journaling in real-time today is twofold...first, I had the kind of day today that inspires me to run (not walk) to my computer and, two, to ask dear friends and family for a very specific prayer.
Today we stand right in the heart of round 3. Billy was in the hospital from February 3-9, home recovering since early Thursday evening. We have had several
good days in a row here at home...not unlike the six days in the hospital this time around. I plan to give a more detailed account of this round in a future post but am so happy to share that this round looked and felt entirely different for Billy Boy. Still, the level of fatigue we're experiencing is unchartered territory for both of us and I must admit I crashed into this Sunday morning feeling like both my body and spirit would NOT recover for days. Thankfully, I sit here with "my cup" spilling over because this day was filled with things like...[...]

Posted 2017-02-10T06:30:00Z

To fly as fast as thought, to anywhere that is, you must begin by knowing that you have already arrived. -Richard Bach


We begin this day in CLINIC. This is the term our doctors use to describe a "team meeting" of sorts. We have learned that nearly everything we do at Lurie Children's Hospital begins with a meeting with either our oncologist and/or Billy's CPN (Certified Pediatric Nurse). Billy is weighed and measured and has his vitals taken before every meeting begins. He also has his port accessed for a routine blood draw to check the levels of his red and white cells and platelets. This will be done often throughout Billy's entire treatment scheme. It will be important to monitor him for LOW blood cell counts because a low count could increase the risk of infection, fatigue and bleeding and also disrupt the delivery of the meds to his cancerous tumors. If counts are low at any given time his doctors will be forced to change his treatment plan with respect to dosage and the timing of his rounds.
At this morning's meeting with our doctors we are able to review the results from the CT SCAN Billy underwent two days earlier, December 21. This SCAN was performed exclusively to assess the progress/success of his initial dose of chemotherapy (Pre-Phase 12/15). Were the meds able to reach Billy's tumors and, if/when they did, were they able to shrink them by approximately 20%?  THIS, alone, would determine whether doctors would proceed with his specific treatment plan. Thankfully, the answer was YES...and we knew this coming into the meeting that morning. We also knew, because of the Pre-Phase success, Billy Boy would begin ROUND ONE that very afternoon.[...]

Posted 2017-01-17T06:24:00Z



We have an early wake up call this morning and a full day ahead of us. Today will bring surgery first thing in the morning for Billy Boy and then an overnight stay for his Pre-Phase round of chemotherapy.  During surgery he will have a port insertion, bilateral bone marrow biopsy AND a spinal tap that will include a chemotherapy treatment to the spinal fluid. A port is a small metal disc the size of a quarter. It is surgically placed to sit just under the skin in the upper chest area. A soft, thin catheter (tube) connects the port to a large vein. That tube is then accessed throughout a prolonged treatment to draw blood for testing and to administer chemotherapy meds into the bloodstream. This port will eliminate the need to poke Billy repeatedly throughout his months of treatment .  We had no idea just how great a benefit his port would be.[...]

Posted 2017-01-17T00:24:00Z



Today Billy's treatment begins with a six hour infusion of a medicine called Rituximab. This medicine is used to treat certain types of cancer because it is a monoclonal antibody against the protein CD20, primarily found on the surface of immune system B cells. It binds to this protein and triggers cell death. This infusion, as the cancer world refers to it, is done at Lurie Children's in an infusion center on the 18th floor. This is the same floor the Pediatric Oncology Clinic is located where we had met with our doctors the day before.[...]

Posted 2017-01-16T22:13:21Z


TUESDAY, December 13

A new day brings yet another test for our boy this morning. He is scheduled for a CT Scan. A CT Scan is used in conjunction with a PET Scan as its principle purpose is to create multiple X-Rays that will provide 3D images/good details about the bony structures, organs and soft tissues in Billy's body. The PET Scan, performed the day before, is more geared toward the cellular level and used more for staging and monitoring the treatment of cancers. Following the CT Scan this morning we will, at last, meet with our oncology team to discuss the results of both tests AND what Billy's treatment will look like. We are incredibly anxious for this first meeting.[...]