Broken hearted…. from ashlee

We just found out that a boy we know, a 20 year old survivor, warrior, man/child, friend, BMT brother, passed away.  Cancer.  More like complications from cancer.  People die every day.  Every minute.  Every second. But it hurts us when it is someone we know.  Or someone we have a connection with.  This 20 year old was not the friend who had been to our house, although we had talked about it. We had not hung out together at a club or the beach. We didn’t text or facetime every day.  But he was part of us.  Part of our life since Michael’s diagnosis.  Which makes him part of our hearts and souls forever. He was one of the first patients we ever met.  It was August 25th, 2020 and Michael had been diagnosed with hepatosplenic t-cell lymphoma just 3 weeks earlier. He had started chemotherapy, and we knew he needed a bone marrow transplant. The details were still murky. This particular day he was having yet another bone marrow biopsy to see if the chemo and steroids were doing the job, slowing down his aggressive cancer, stopping it for long enough so the doctors could move forward with his transplant.  We were in the minor procedures suite, Michael slipping into a hospital gown while we waited to see the anesthesiologist who would be putting him under.  We were separated from 3 or 4 other patients by animal print curtains. We were surrounded by smiling elephants and lions and hippos and cats.  Pediatric hospitals were definitely colorful. It was not very private, you could hear the other caregivers trying to distract their children from what was coming.  A baby was crying.  A dad was talking on his phone making some sort of business deal.  We could hear cartoons from an iPad.  Really loud cartoons. But by this point, privacy was a thing of the past. Our curtain was wide open, we could see the nurses station and people coming and going. There was a kind of commotion as an older teenage boy was wheeled in with his mom.  He was greeted with cheers and congratulations and high fives (well, it was covid, so high “elbows”).  Eyes were lit up all through the minor procedures suite like Christmas and you could feel everyone beaming with smiles from behind their masks. This duo seemed like a big deal around here. The mom had a good, happy energy.  She caught our bewildered stares and told us proudly that her son had just celebrated his “Day 100”.  He had made it to 100 days post bone marrow transplant.  It was huge, a day to ring bells, to applaud, to party!  He was cancer-free. It was still so new to us, we looked at them in awe. His mom felt our silent invitation to hear more. She squeezed in next to me and started telling us eagerly about her incredible son. He was a fighter. And a champion. This 18 year old (a year younger than Michael) had already kicked cancer’s butt once. He was first diagnosed when he was only 12 or 13, I can’t remember. This was his second battle.  He was winning again, though. This time had been more complicated, he had needed a bone marrow transplant, not just chemo.  But here he was, passing his day 100, and thriving. It had been rough for him post transplant, he had almost died, been in the PICU (pediatric intensive care unit), insane fevers, GVHD, all the complications. I must have looked terrified, because she touched my hand and told me not to worry, Michael would not get all those complications.  I almost believed her.  I did believe her.  Michael was coming into this with no history of sickness or disease, no cancer in his past.  His BMT should be a breeze.  In just those few moments of conversation we became family.  A different kind of family.  I felt a closeness to them.  We loved Michael’s oncologist and the oncology nurses, they were caring and brilliant and knew so much about the journey ahead, however they were not the ones going through this. Not really. But this mother and son shared a bond with us that NO ONE IN OUR LIVES, NO ONE WE HAD EVER MET, shared.  Cancer and a BMT.  They understood.  They had been there. They knew our hopes and fears.  Our faith and our doubts. The physical agony and the mental struggles. They knew even more.  And so that day, they became our heroes. That meeting gave us a goal, get to transplant, yes, but get to Day 100 and you will have “made it”.  They were on their way out of treatment, we were on our way in, but that day, when our paths crossed, became a red letter day.  

After that it was months before we saw the teenager and his mom again, but they stayed with us, part of the goal, make it to Day 100, ring a bell, get cheers, celebrate the victories!  The next time we met was a few weeks after Michael was discharged post transplant.  We were in infusion and the teen’s mom saw us through the window of their room.  She rushed out to see us and hear the latest updates.  We were like besties. I shared how Michael was just starting to get some of the GVHD complications that almost took his life.  It was rough. The heroic teenage boy also had been experiencing a few setbacks, but they were both strong and fighting and I believed it when I said nothing could stop them.  We compared notes, laughed at the similarities of the two warriors, exchanged numbers, the boys followed each other on instagram, I got some mama advice, we vowed to stay in touch, and hopefully, in a few months, when the boys were less immunocompromised, we would get together and relax outside of the hospital. 

It never happened.  

Michael and I would see them off and on in infusion, for the next year, and we did stay in touch.  We would text, DM, sometimes share tears, sometimes share successes, and occasionally we would see each other in the hospital long enough to hug and have a conversation. But Michael was going through so many difficult complications of his own, so many hospital admissions, near death moments.  Michael passed his Day 100 with no celebrations, he was too sick with TMA and GVHD to ring a bell.  And then the sad day when we learned the other boy’s cancer somehow came back. Again.  We were devastated for them. We tried to keep sending them prayers and love and as much motivation and inspiration as we could, but how could we cure his cancer?  We were barely surviving ourselves. The boy went back in for another transplant, a more experimental one, car t-cell.  They couldn’t do it at Nicklaus, he had to go to a different hospital, Jackson at University of Miami. Michael had also been doing treatments there, so again, we compared notes, talked about the similarities, the common ground, and felt bonded.  The mom and I texted, trying to lift each other’s spirits, as both her son and Michael seemed to hit a wall, in early 2022. We did not know if either of them would make it.  It was so painful and exhausting emotionally, mentally, physically.  But then, miraculously, May of 2022, we found ourselves sharing the same room, in infusion, at Nicklaus Children’s Hospital, and both boys smiled. They were thin, fragile, and had a new sort of look in their eyes, the look of too much experience for their age, perhaps.  They had been through far too much. But they were ALIVE. They looked at each other with what I felt was common admiration.  They had made it.  

That was the last time we saw each other.  A few weeks later, Michael got the message from another BMT friend, the boy had died.  And we were in shock.  And devastated.  And numb.  And shaken. And crushed. 

We pray for the family.  We cannot imagine.  We had been so bonded, but now?  We will not see them in the hospital anymore.  We will not share similar complications or medications or advice on side effects, or how to park at UM without paying a fortune. They are part of us forever…..  They knew and understood more than anyone.  But how can we understand this?  

We can’t.  And our common bond, the bond that tied us together, was broken.  Like our hearts. 

1 Comment

  1. Jan Kustron says:

    Oh dear, Ashlee and Michael, I am so sorry!


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