ashlee’s perspective, 1 year later

Remembering July 14th, 2020.

It is hard to believe that it has been just over a year since Michael arrived at Nicklaus Children’s Hospital as an athletic 19 year old who simply wanted to know why he felt tired all the time.  He was tall, muscular, blonde, tan, mischievous eyes and grin, all the sass and insecurities of a middle child including not knowing exactly what he wanted to be “when he grew up”, but still, like-able, love-able, funny, annoying, charming……a sweet kid with a genuinely good heart who had his whole life ahead of him.   You know what happened next.   A bone marrow aspiration and biopsy.   A cancer diagnosis.  Hepatosplenic Lymphoma, not a very treatable or well-known disease.   The documentation is slim.  The survival rate is unclear at best.  Average life span, 8 months post diagnosis.  But I did not know any of that on Bastille Day, 7/14/2020, thank goodness.   I did not think about the next 8 months or 8 weeks or 8 days or 8 hours.  I only knew that around 4:45pm on Tuesday, July 14th, 2020, we were told Michael needed chemo and at that moment, everything stopped.  And then it started again but nothing was the same, even though inside of us, in our core, nothing had really changed.    He was still a playful middle kid and I was still a goofy, energetic mama.  2 weeks later, his brilliant oncology team added radiation and a bone marrow transplant to his treatment plan.  And for some inexplicable reason, Michael was given a 2nd chance at life.   As I look back on this year, so many beautiful moments stand out, so many miraculous events, so many angels who appeared when we needed them, so many opportunities for Michael, and for me, to try to live up to this gift of life.   I have had people tell me they admire us, because we have stayed so positive and optimistic.  I do not think we had a choice.  The option of giving up or giving in, it just never even presented itself.  Not that it has been easy or smooth or carefree….. but if I look hard, if I do the investigating and go right to the source, to ground zero, that day, July 14th, 2020, when Michael had that tiny amount of bone marrow extracted from his lower back and the pathologists studied it under some almighty microscope and saw those cancerous cells, and then he was wheeled in a hospital bed from the 2nd floor outpatient infusion unit to the 6th tower inpatient oncology floor, we cried for a moment, but then we looked out the window and saw the most beautiful sunset.  I still have a picture of it in my camera roll on my phone.   Somehow that night set the tone for the next 365 nights.   We were still us.  We still had our inside jokes and songs that made us dance.   We could still laugh.  We still had love and we had hope.  We had the sunset. Whatever was ahead of us, it could not change our souls or our spirits.   Or if it did change us, maybe it was only to enhance who we already were.  Make us better.  We found out how vulnerable Michael’s physical body was, but we also found out how resilient he could be.  You know how there are urban legends of mothers with superhuman powers that lift cars to save their trapped children?   I am not sure we have that capability, but something does happen when you have to face your own, or your child’s, mortality.  And this magical thing sort of happened not only to me, not only to Michael, not only to Jennifer and Steven, but to everyone surrounding us.   We have felt a communal super strength.   And just like the sunset, this force has defined the past 12 months.    We woke up on July 15th, 2020, with the same sun rising on the other side of the tower.   I know how cliche this sounds, but there was some kind of reassurance in that dawn, some kind of predictability.   I am lying if I say this year has only been optimism and laughter, of course not.  We have been through never-ending, difficult days, when I just prayed for the sun to set.  We have spent terrifying nights that seemed to last forever.   I have seen my child in pain and not be able to help him.   I have been separated from my other two children when all I wanted was for us to be near.  We have been through the immediate side effects of chemo, we know about the long term effects of radiation.   I watched Michael be brought to the brink of emptiness so his body could make room for the new stem cells.  I have seen him gravely reject and then ever so slowly come around and allow his new marrow to engraft.   I watched him start the healing process, finally go home, and then return to the hospital with acute graft versus host disease, GVHD.    Not once, but over and over.  His healing is taking so much longer than we had expected, but he is healing.  One year later, and he is HERE.  Through it all.   Maybe you have seen our videos.  They do tell the story.  A lot of joy, a lot of singing, dancing, laughing and so much metamorphosis, suffering and love, mixed in.   For all of us.  And Michael, well, he has not so much changed, but perhaps evolved..  His new DNA has given him purpose.  Isn’t that the goal in life?   Not that it is over……. The progress and the pain.  Even now, Michael is facing a new bout of chronic GVHD, both gastrointestinal and liver.   Maybe a long-term complication.  But how can we complain when his life has been spared?   And so many others have not.   We are hammered by perspective.  So now we embrace new medications, shown in trials to work miracles, and we bide our time this next week to see what happens.    His doctors prepare alternative plans, and we continue to write, watch basketball finals and work out in our home.  Still immunosuppressed, still quarantined, but hopeful.  Optimistic.  And definitely changed, but still the same.   Just like there is B.C. and A.D., we have a timeline in our house, too.  It is divided by before Michael had cancer, and after.  The pivotal date, July 14th, 2020.  Before Michael had cancer I thought I loved my life, I thought I was blessed, I thought I appreciated people and family and being alive.  “After” I realized I had barely scraped the surface…. I grasped how much deeper it could go.   On July 14th, 2020, we were able to see the beauty in the sunset…… And today, tonight, we are so grateful to be here, and to watch the sun set again.  And laugh.  

Forever grateful for YOU, who have changed our lives with YOUR love and support,


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