So our journey has finally ended.  At 8:30 this morning Lorenzo passed away peacefully in his sleep.  As this will be our last post, I will go into depth on what has transpired in the past couple of months.  There are two reasons for this;  the first is a simple explanation of what happened and the second is to give some context for something I will explain later.

As most of you know Lorenzo relapsed 30 days after his transplant.  This is something that is basically unprecedented and speaks to the aggressive nature of his cancer.  He immediately began another round of chemotherapy with two newer, less toxic drugs called Azacitidine and Venetoclax.  This combination has shown great response rates in older patients unfit for standard chemotherapy and while he initially responded well the cancer came roaring back after a few weeks.  At this point he was in very rough shape and our doctors brought up the idea of stopping treatments.  We decided we weren’t ready to throw in the towel just yet as there were still some powerful new drugs available as well as the potential for a clinical trial for a new therapy targeting his specific AML mutation.  

(On a side note the world of pediatric AML is a murky place.  The vast majority of people who are diagnosed with AML are over the age of 70, many of whom would not be able to withstand traditional chemotherapy.  In the past 5-10 years this has lead to the development of many promising new targeted therapies which are highly effective with less toxicities.  The issue is that there aren’t large studies about how these drugs work in pediatric patients.  In other words there exists an array of things to try, but there is no standard second, third, etc regime.  The best the doctors can do is make their best guess and try it out)

About a month ago he began a new form of chemotherapy called Vyxeos.  This is an updated version of the two drugs which initially got him into remission.  Once again, it seemed to be working initially.  His white blood cell count dropped to zero and then the waiting game began.  We enjoyed some time outside of the hospital at Ronald McDonald house and he had several hours each day where he felt well.  Eventually though we landed back in the hospital as he was requiring daily transfusions of blood platelets.  Yet still we had hope.  About a week ago his counts began to climb.  Unfortunately they climbed quickly, and at that moment we knew it was back.  This time Lorenzo went downhill very quickly.  We decided in that moment barring acceptance into the clinical trial we would not pursue any further treatment.

The clinical trial was for a drug named Revumenib.  It is a pill administered twice daily and was created precisely for his specific type of AML.  Basically Enzo’s leukemia is encased in a shell, which doesn’t allow it to mature into normal types of white blood cells.  This medication breaks that shell.  So rather than destroy everything it simply allows them to mature into normal healthy cells.  In other words, very low toxicity.  The only people who’ve ever received this drug are people in Enzo’s situation- patients who have been through multiple lines of failed treatments and stem cell transplants.  In a population that was basically dealt a death sentence they were seeing complete remission rates of 35%.  This drug has been on our radar since this ordeal began, but we learned a couple of months ago that he didn’t qualify for the actual clinical trial due to a prior chemotherapy agent he received.  However, it was available in a ‘compassionate use’ setting which is what we were pursuing.  At first it looked like it wasn’t going to happen, but then out of nowhere our doctors informed us that we had been granted access.  The caveat though was that they would have to administer the drug at a hospital conducting the clinical trial and the nearest place was Cincinnati Children’s Hospital.  We were told that in a matter of days we would be taking Mayo’s plane down to Ohio where we would begin treatment immediately.  We were overjoyed.  Julia went back to Mankato to prepare some things at home while I stuck around Mayo watching Lorenzo.  While Julia was out our doctor stopped by the room to give me further information on the drug.  She informed us that due to his advanced state his chances were more like 10%, that the drug didn’t start to work for a couple of weeks, and that should his disease progress it would be very difficult to get him back to MN where he could pass away around family.  While she was relaying this information I looked through the window at Lorenzo sleeping in his bed, and had a moment of clarity.  This was the end.  

We were chasing miracles and the price we paid for it was our son’s suffering.  One more day with Lorenzo was not worth what would he would potentially have to endure for us to get it.  What would that extra time actually get us?  A chance to say good-bye?  A chance to tell him how much we loved him?  If there is any silver lining to cancer it is that it’s a slow process.  Everything that needed to be said has been said a thousand times.  I’ve looked my son directly in his eyes for the past six months and told him everything that was in my heart, with total sincerity.  I also made the decision months ago that during this process I was going to stop being his father and become his best friend, and through that process we learned about each other on a much deeper level.  I told him every story, showed him every movie, and listened to every inappropriate song I’ve ever loved.  And he brought me into his world as well.  All was not dark and bleak in this process.  It was punctuated by the deepest feelings of love I’ve ever experienced.  

Once we decided to discontinue his treatment things progressed rather quickly.  In fact it was a matter of days.  We preemptively put him on heavy medications for nausea and pain, and he quickly became very sedated.  Fortunately he never experienced much pain.  Yesterday afternoon I was speaking with one of the nurses who we’ve grown very close to and she asked me if we’ve ever told him ‘It’s ok to let go’.  The thought had never occurred to me.  This morning while watching his breathing become more difficult I went over and whispered that in his ear.  Julia then did the same.  And  within a matter of minutes it was over.  Quickly and peacefully, exactly as we’d hoped.  

This brings me to the second reason for such a lengthy post, which is the grieving process.  As many of you are aware, Julia and I have basically disappeared for the past six months.  This was mostly so we could focus all of our energies on Stella and Lorenzo.  But to a lesser degree we simply did not want to engage with people and endlessly discuss the horror we were living.  We are blessed to have such wonderful family, friends,and community supporting us throughout this time.  We feel your love and well wishes from all directions and appreciate it more than you can possibly realize.  But the thought of retelling this story every time we bump into someone is more than we can bear.  To that end Julia, Stella, and I plan on disappearing for a while.  Stella’s always wanted to see Paris so maybe we’ll go there.  What we need is to be away.  We need time for the three of us to process our emotions in a place where we don’t have constant reminders of his absence.  We need to be able to cry and then step outside and be surrounded by people who are unaware of our trauma.  We need to see something beautiful to remind us that all is not bleak and dreary in this world.  And when we return we will hopefully have a plan on how to move forward.  What we would ask all of you is when you finally see us just treat us normally.  We lost our son/brother and we are devastated.  That is given.  You already know the details because I wrote them above.  We have plenty of family whose shoulders we can cry on.  What we crave are the mundane and quick interactions of daily life.  The gripes about the weather and how disappointing the Vikings are will do more for our healing than discussing our emotional state.  The quicker we are viewed as simply Dan, Julia, and Stella rather than the family who lost a son the better. 

To more practical matters we will not be having a funeral or a wake for Enzo.  We offered his body to the Mayo Clinic for research.  Lorenzo always loved science and it seemed fitting.  Hopefully they can learn something from him that will help future families avoid the terrible situation we experienced.  When they are done he will be cremated.  Sometime in the spring, after we’ve had time to heal, we will have a Celebration of Life.  He was the living embodiment of strength, courage, and bravery and his short life should be celebrated rather than mourned.  

This final paragraph will be personal.  Simple ramblings about what I’ve learned from this.  First, I’ll be grateful for the time we had rather than the time taken from us.  We have been living on a knife's edge for months and I really, truly saw everyday as a gift.  I was fully present in a way I never imagined possible.  As little as 5 days ago we were building Lego’s and listening to music.  It was heaven and every moment felt like it.  Second, I became a better father during this process.  Spending so much time with Lorenzo made me appreciate what a remarkable person he was.  Assumptions I had about his emotional maturity or his thoughts on things were completely off.  He never ceased to amaze me with his insights, humor, and logical reasoning.  In the hum-drum of normal life I would never have had the time to simply sit and speak with him to such an extent, and in that process I discovered the person my son truly was.  Third, I will have no regrets or ‘what ifs’.  He had incurable cancer and that’s it.  Nothing that exists in the medical world today would have saved him.  Julia, Stella, and I poured every ounce of ourselves into making him feel comfortable and loved, and to that end we exceeded.  Any decision we made where we had some semblance of control was the correct one.  Finally, I will move forward.  I owe that to my son.  His legacy won’t be memorials, baubles, or memorabilia.  It will be the three of us showing a fraction of the courage he displayed to live our lives to the fullest.  The suffering we will endure pales in comparison to the suffering he endured.  Inside a quirky, skinny little boy was the heart of a warrior.  Somewhere that same bravery is inside all of us.  So we will grieve for a while, and then we will spend the rest of our lives being the best version of ourselves  possible.  His legacy will live on through us.