March, 2022, in the hospital over and over……from ashlee

Brace yourselves, this is a different kind of update. As I write, I wonder if I can share this……It is more personal, more painful, emotional and so private. But you have been with us through every celebration, every dance, every chacha, every setback, every victory. You have allowed me to bring you into our lives, and so I continue with honesty, hoping you will embrace the authenticity. We have been in a strange kind of time warp. Not the fun, musical one in The Rocky Horror Picture Show. My brain knows that it is March, ‘22, but my mind feels like it is still November of 2021, when Michael started this long string of hospital admissions. We have lived in the 6th tower of Nicklaus, the last 13 of 16 weeks. But you already knew that. It seems crazy, just 4 months ago we were doing home workouts, walking almost a mile around the block, making tiktoks and podcasts, spending any time at home thinking of ways to motivate. Michael was writing. Talking. Smiling. Laughing. Joking. Charming nurses at NCH and UM, and pretty much everyone in his path. He had plenty of moments of difficulty and worry, anxiety and fear, but he could always overcome them. He had goals to return to school, to continue his studies and use his challenging experiences to serve a greater purpose, to fulfill some sort of destiny to inspire and heal others. By the end of October his liver was improving, the best it had been since being diagnosed with liver GVHD in April of 2021. ECP at UM, infusions at Nicklaus, and the daily dose of immunosuppressant medication were slowly working. His liver GVHD was still prominent, still a worry, still threatening, but it was slowly getting under control and we felt optimistic. Until November when Michael surprised everyone with excruciating abdominal pain and gallstones, putting him through 2 surgeries in that unexpected, 6 week admission….. the admission that gave us the phrase we cannot forget: “Beauty in Pain”. That was an admission of morphine, dilaudid, non-stop vomiting, weight loss, and so much physical discomfort, yet balanced with even more love and support, and it may be hard to believe this, even JOY. We were finally discharged after Christmas, home for a few days, but right back with another GI infection. During this time, ever so quietly, while Michael’s body was focused on healing from gallbladder surgery and C-diff, the liver GVHD snuck in there and flared up. All of his labs were showing that his liver was not happy, or more accurately, his new marrow was not happy with his liver. Michael’s physical pain was finally getting under control, but GVHD was wreaking havoc on his insides. It was not painful in the sense of physical agony, but the last month has been far more painful than any part of this long cancer/BMT/GVHD journey for his spirit, his soul, his mind, his heart, his being. For 20 months he has been a rockstar warrior. Mentally and physically. Knock him down and he gets right back up. There is always the chacha, the steps backwards, but they are followed by steps forward. Crying is followed by hugs and conversation. Helplessness followed by helping others. But just about 6 weeks ago, while admitted, Michael was put on a most extreme dose of prednisone (steroids). After 3 days of zero sleep and 23 of every 24 hours as an emotional wreck, the dose was lowered to the next highest dose- still extreme, but possibly the tiniest bit more tolerable. He stayed there for a week, still going crazy, but not quite insane. His liver was stagnant, not better or worse, so the dose was nudged down a bit again. The doctors started looking for other solutions to cool off his over aggressive bone marrow, knowing how hard the side effects of prednisone were on Michael, physically and emotionally. He started a new immunosuppressant and we had high hopes this one would do the trick. It did not. Less than a week later he was admitted to The University of Miami Hospital for a liver biopsy. You know the result. Chronic liver GVHD, longterm, lifelong, enduring, etc. He was transferred from UMH to Nicklaus and readmitted. And put back on that utmost dose of prednisone. Doctors from both hospitals felt it was urgent and the only thing that would stop the progression in its tracks: steroids. My 20 year old healthy, non-drinking, athlete was heading towards liver failure. This was the 7th time Michael was put on steroids and for those of you who practice numerology, I do not know if “7” has some sort of significance for you, but it did for us. The 7th time is not very charming. The 7th time has been overwhelming and even uncontrollable. What has been so incredible about Michael the last 20 months has been his spirit. We even made t-shirts that say “STRONG”. Because through every challenge, he IS strong. Of course, strength has many shapes. Sometimes it means lifting a 7lb weight and keeping his muscles active. Sometimes a walk around the block or the hospital hall. Sometimes it means posting an update or making a video. Sometimes it means taking a shower or just getting out of bed. He does not give up or back down. His smile, through every phase of treatment, still catches me off guard and makes my heart melt. He always finds the light, sees the light, keeps the light in his eyes. We have momentary breakdowns, we face mental struggle on the daily, but we always find a way through. Only now it is harder than ever. Darker. Muddier. We know it is the steroids. It is undeniable, they can do so much good, they have saved his life many times. But this time, the steroids have touched his spirit in a different way. He is anxious, he is fearful, and he just wants peace. And all I can do is hug him and tell him to ride this out. This is not you, Michael. You do not give in. You do not give up. You get back up. He is so fragile even though he is STILL so STRONG. His legs are weak with AVN, his body is exhausted from lack of sleep, his mind tired from the racing thoughts steroids provoke. I do my best to help him find pockets of happiness. Pockets of joy. Pockets of peace. Even a moment. I repeat, Michael, this is not you. This is steroids. Remember who you are. And so, in some of those pockets last week, we downloaded an instrumental track, wrote some bars for a rap, recorded with our not-so-professional mic, made a video, did a little editing, and we share it with you. This is NOT toxic positivity. This is not how we are 24/7. This is not us covering up our pain. We are not dancing and laughing and singing at every waking moment. But, we did find enough pockets to smile, to get creative, and to poke some fun at our roller coaster ride. Michael has way too much swag for me, but I am ok with that. Even in pain, he is still cool. He must have a really dope mom. Today, we finally see the steroids are doing some good. Finally. I am afraid to say it out loud, to write it, to jinx it, but his liver enzymes are improving, his bilirubin slowly, slowly, heading in the right direction. We know there is beauty in this mental anguish, too. The anguish that is even slower than the bilirubin to subside. You know we are never giving up, never giving in. Ever. Too much good is left to be done! I am beside him 24/7, but this is my job. And I love it. And I would not trade it. And I am more grateful for every moment beside him, painful or peaceful, than I could have ever imagined. Thanks to you all…… we have hope always…..