how it started

Our family is made up of three kids, Steven 21, Michael 20, Jennifer 17, and me, Ashlee, the mom. My husband, their dad, died of Large B Cell Lymphoma 5 years ago, May 12th, 2016.    Ironically, Michael’s cancer and his dad’s, are not genetic or even linked. 

The kids grew up on Miami Beach, with the ocean, the boys sailing and surfing, Jennifer dancing, like her mom. Both Michael and Steven were part of the Olympic Development Sailing Team and they traveled the world competing as windsurfers. We missed their father, but it was a beautiful life…..

Summer of 2020 Michael was feeling especially tired, we thought maybe he had Covid, but he had none of the other symptoms of the Coronavirus.  Cancer was not anywhere on our minds.  July 14th, after a routine blood test that led to a bone marrow biopsy, he was diagnosed with Leukemia.  On August 3rd, it became more specific, Hepatosplenic T-cell Lymphoma.  They told us not to look it up on the internet.  We did not.  It is a rare lymphoma, and the statistics are pretty frightening.  Michael went through 3 fierce cycles of chemo, then radiation, a little more chemo, and finally, a Bone Marrow Transplant on October 27th, 2020.  Steven and Jennifer were tested to see if they were matches, they were not, but Be the Match came through with a 100% match- a MIRACLE, in fact.   

Since the transplant Michael has had a lot of setbacks, complications, etc…… he experienced engraftment syndrome about 10 days after transplant- life threatening, but pulled through, fighting all the way.   He has been re-admitted with GVHD (graft versus host disease) of the skin, of the GI, and now of the liver. He has dealt  with TMA (thrombotic microangiopathy) and AVN (avascular necrosis) of the left knee. He is still fighting but we are stronger together, always…..

We started to share the story on social media and realized that opening up not only helped us, but it also inspired and perhaps encouraged others.   So now we share our story here.   Michael and mom, telling the truth, the pain, the humor, the laughter, the life lessons and the love that have been our constant…. Here we open our hearts to you…… we hope you will join us….

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