April…. from ashlee….

The last month has been intense and Michael has gone through tough moments. The toughest. I feel like I should backtrack a bit…… you know his story. Diagnosis. Chemo. Radiation. Transplant. Immunosuppression. A lot of rules. Limited foods he could eat, limited contact with friends, no going out, just hospital and home. No beach. No sun. No ocean. The places that we had always

gone to heal, to feel alive, to feel whole. The rules were there for good reason. They were there to protect him and keep him safe. And we followed them to a T, so Michael COULD get back to health, ASAP.  We felt if we were obedient, little by little, he would get his life back. Obviously, he would never be the same person he was before, he had been too changed to go back without evolution, but still, move forward to a life he could recognize and that could bring him joy. Post transplant, GI GVHD brought even more limitations to his diet, more rules. And the start of our love/hate relationship with steroids. Next was TMA, more drugs, more immunosuppression. April, 2021, the first liver biopsy and the onslaught of liver GVHD. More steroids. 10 months post diagnosis and we were still spending at least 3-4 days a week in the hospital. His 20th birthday, May 19, 2021, slowly improving, finally weaning off steroids. We made our first “STRONG” shirts, did a TikTok together, decided to put our story out there, hopefully to help and inspire others. Still no beach, no sun, no going out, all the restrictions from months before remaining in place, yet even as faithful we were to all the do’s and mostly don’ts, it was a summer of too many surprise hospital admissions, stomach issues, and full force, life threatening, liver GVHD. Steroids were the answer again. By August he was in a wheelchair from the Avascular Necrosis in his legs, a side effect from, you guessed it, steroids. His doctors agreed “no more!” of this medication that seemed to be a deal with the devil. It was a group decision. His liver was not responding to prednisone, it was torture, and he was weaned one final time. But his liver was still critical. There had to be another way. He started ECP (extracorporeal photopheresis at UM) and an additional immunosuppressant, hopeful this combination would be a gentler answer. We were spending 4-5 days a week in the hospital between UM and Nicklaus. Michael took a college course online, some “normalcy”, but he simply had no energy to keep it up. ECP was too much, too draining, physically, emotionally, mentally. This is when we started the podcast. A project we had been talking about. We had a lot to share, a lot to say, and we both felt compelled to help others. It made all this suffering somehow justified, if we could use it for the greater good. We had been blessed with so much support, we wanted to give some back. By October of 2021 we were exhausted from the constant back and forth to the 2 hospitals, but Michael had gone over 2 months without being admitted overnight. A record. His liver enzymes were slowly coming down. His eyes and skin were not as yellow. It was a tough schedule, but it seemed to be working. We were feeling cautiously optimistic. Until……November 3rd and Michael was admitted to Nicklaus Children’s Hospital with a bad cold. Next came the string of complications that kept us admitted to Nicklaus for the past 5 months. Gallbladder drain, surgery, more liver biopsies, and finally, relapse of even more severe liver GVHD. In desperation, he was put back on the cursed steroids. The side effects from the steroids this time were more extreme, but his liver was failing. Turns out, most of the doctors did not think he would make it. Neither did Michael.  And this is when his spirit kind of gave up, or more accurately, he just wanted peace. No more fighting. No more struggling. He wanted to go in the ocean and hug a friend. He wanted to be off the drugs, off the medications. Every. Single. Medication. Has. Side. Effects. You make a choice each time you swallow a pill that might help, but also alter something else in your body. You weigh benefits vs cost. Balance, right? Not always balanced, though. We did finally go home, after almost 4 months in the hospital, but the quality of life still looked bleak and I felt Michael was so heavy. I could not lift him up, no matter how hard I tried. I had never seen him without hope in the 21 months since diagnosis. He was always able to stand up after every knock out.  But, this time was different. He did not want to pull himself up again, only to be pushed down. He was readmitted to the hospital after only a few days home, he felt so crappy, physically AND mentally.  None of the treatments were healing his tired liver. Steroids were killing his soul. We pleaded with his doctors. Michael was not going to make it, regardless of his liver, if he could not get off this drug. And they agreed. At first he seemed numb. But gradually, as the steroids left his system, his eyes began to clear and the beautiful Michael smile, ever so slowly, returned….. Because there was a miracle in the works. A brand new, hot off the presses GVHD medication. A simple pill. One pill a day. Michael had heard about it months earlier, but in order to get approved you had to have failed multiple lines of treatment.  At this point, on the verge of needing a liver transplant, Michael finally qualified. We went through hoops and a specialty pharmacy. The medication was delivered to my house, and my daughter Jennifer brought the last hope, packaged in a nondescript white bottle, to the hospital. The same hospital where we have been (and still are). Within days of starting, his liver enzymes showed signs of improving and his bilirubin started going down. Was this a revelation? Or a joke?  Not a joke. He has been taking Rezurock for just over a month now, and his liver, yes, it is damaged. Yes, it has much healing ahead, but it is functioning. It is coming back to life. Like Michael. We are still in the hospital, but hoping to go home soon.  As usual, another complication did arise (Michael and his cha cha!). He started looking like he was in his 3rd trimester of pregnancy, including swollen ankles, back pain, nausea. His liver was having another little hurrah, ascites. Build up of fluids, mostly in the belly. And so, one more procedure, as they surgically placed a tube into his lower abdomen to evacuate the liters of fluids that his liver can’t handle (yet!). But every day his labs improve. Every day his smile broadens just a little. And so we are standing. I jokingly named his IV pole SASS when he was at the peak of the pregnant belly: “Swollen and Still Standing”. I changed it to “Skinny and Still Standing”, once those fluids started leaving his body.  Now that first “S” stands for “Strong”.  But I am adding one, “SMILING and Still Standing”. Michael said it best the other day as we were walking laps around the hallway of the 6th tower oncology floor: “mom, my body just won’t give up”. Long ago we stopped questioning the “why” and we try to let go of the “it’s not fair”. Because we do not know why and it is obviously not fair, but then again, the blessings, the love, the GOOD we have experienced, maybe it does balance out in the end.  All these words to say, it has been another month of our chacha. This time it was the slowed down, acoustic, taking-our-time-stepping-forward version. Taking our time getting up.  We hope the drain comes out soon, so we can go back to my daughter, to our kitty, to life outside of the hospital. (AND to find a new home to rent! Sigh) We plan to add a little quality of life, maybe break a few rules for the greater good. Eat something crazy. Put our toes in the sand. Walk in the sunshine. I love you. We love you. We ARE still standing, somehow….. I believe with all my heart thanks to you and the love that encompasses us every single day.  Sending it ALL back to you……

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