A little January, 2022 update on Michael, mom, and coming home… from ashlee’s perspective

I started this with the words, “we are home”, to let you know that after over a month and a half, we were finally discharged from the hospital. Sadly, it was short lived, because I am continuing this love letter from the hospital, admitted yet again. We spent almost 2 weeks at home, sleeping under our own roof every night. I have wanted to reach out so many times to thank you, to fill you in, to hug you via my words, but caring for Michael has been 24/7, especially at home, and there has been a lot to process. Getting my thoughts from heart to print takes time. After more than 6 weeks in the hospital, a stay which included both Thanksgiving and Christmas, we left room 6019 on December 26th, 2021, walked down the hall of the 6th tower oncology floor, said goodbye to our other family, our home away from home hospital family, got in the elevator, headed to the parking garage and my very dusty car, and cautiously, hesitantly, joyfully but also fearfully, drove away.  By far this had been the most intense admission, both the stay and the departure.  I know it sounds crazy because the Bone Marrow Transplant admission was pretty extreme, but this was right up there on the intensity barometer. For Michael’s BMT we were so ready and even excited.  We knew what we were signing up for. We knew it would be a 4-6 week admission.  We knew Michael would be chemoed, radiated, knocked down, wiped out, infused, medicated, depleted, drained, and immunosuppressed. Jennifer and Steven were prepared with meal trains and uber eats, Publix gift cards and house cleaners. Friends and family had their backs, and most importantly, they had each other.  I packed motivational posters to hang in Michael’s hospital room, brought warm lamps and essential oils to soften the sterile feel, we had our favorite blankets and pillows to make the beds more comfy, yoga mats and light weights to keep us moving, legos and card games to keep us playing, and we were determined with a strong mindset, ready to camp out in the BMT unit for the long haul, at least a solid month.  And boy did that sound long.  But November 10th of 2021, just over one year later, was different.  That admission caught us off guard. Bills were not pre-paid. No one was cheering as we drove off. Laundry was spinning in the washing machine and Kitty had only enough food for the day. The house was tidy but the floor definitely needed a vacuum.  We left that morning never anticipating that we were leaving for a month and a half. You know the next part, Michael’s labs were not looking good, his pain was off the charts, and he could not hold down food or liquids.  We were admitted with the clothes we were wearing and that was about it. But this is not an update about spending 6 weeks in the hospital figuring out his gallbladder and GVHD. I think you all know from the medical standpoint it was brutal. He survived via IV nutrition, went through 2 surgeries, medications, side effects, more doctors from more specialties than we had ever encountered. He re-learned to walk, still working on learning to eat, still working on managing pain. You get the idea. No, this update is to bring you into our home, as it is now.  Well, as it was…..until January 9th when Michael was readmitted again. Before last week, Michael and I both received so many kind, heartfelt messages congratulating us on being home.  Our friends and family, YOU, were excited for us, happy for us, and we truly are so grateful for your notes and kind words. But at the same time, it is hard to explain how difficult it is to come home after spending so much time in the hospital. Wonderful, yes!  But also incredibly challenging. Michael lost over 20 pounds the last 2 months and even though most of the females I know probably want to punch him in the face when he complains about his skinny legs, for the athletic guy who spent the last year trying to rebuild some sort of strength after his BMT, these last 2 months took him right back to transplant.  Back to ground zero.  Maybe even ground “minus one”.  I think he has never been this thin, this depleted. I remind him that he might be back to the drawing board physically, but mentally- he is so changed and evolved.  He is so rich and deep and authentic. And isn’t that the REAL goal? Still, it is not easy.  It’s the same for his liver. ECP had just started to kick in around October, the liver GVHD was getting under control, he was less jaundiced, less yellow, but after 2 months without treatment, his liver has also regressed.  The solution sounds simple.  Start again. Be patient.  Moment by moment.  Be grateful you are alive.  Appreciate the fact that it could be worse.  So much worse.  And yes!  This is all so true and we know it with our minds.  We agree. But emotionally, our hearts, they feel the pain of yet another setback.  It seems that with time you should build up your endurance and strengthen those mental muscles that get you up when you get knocked down.  But I have to confess, it’s hard. Every time you get pushed back, you are a little slower to get up. It has been exhausting. No breaks. No days off. No vacation.  And now, only 2 weeks after being admitted for 44 days, we are back at Nicklaus. So yes, I started writing this to let you know we are home, it is challenging, it is good, it is painful, it is beautiful, we are moving forward. Now I continue and add that we are back to our cha cha. Forward and back.  And another step back.  But the truth is, I cannot complain, because the setbacks teach us so much, and every time we fall, we land in the arms of the most amazing humans ever, helping us back to our feet. Again, we have YOU.  We have doctors and nurses and residents and specialists clamoring to his bedside to unravel this mystery that is Michael’s human and ever so fragile body.  It cannot be easy for them, he is a complex case, yet they approach us with optimism and hope,  ideas and brain power, time and energy, and what is never short of total dedication and passion.  They love their jobs, they love my son. We know he must be in the right place, in the right hands. He has been poked a lot. Tested more than any human that I know.  He has a bacterial infection, and probably something viral that has been tough to pinpoint. Almost ended up in the PICU (pediatric ICU) but somehow stabilized after a flurry of what I called “The Grey’s Anatomy Episode”- so many doctors rushing to his side and pulling out ALL the stops! Thankfully, his cancer continues to be in remission, and that is huge. The liver GVHD is still threatening, still menacing. GI issues linger….. an NG tube, a feeding tube, was inserted through his nose, down the esophagus, into his stomach, but lasted only a day…. We are working on other, more gentle, more organic solutions . Quality of life has been tough but somehow every day we find pockets of joy.  Sometimes 5 minutes. Sometimes an hour. It can be a conversation or a song. Sometimes a lego build. Or a facetime with family or a friend. We even had a zoom call with an OG Heat player.  That was a pretty cool pocket.  We have been cleared to go home, to finish this recovery at the place we have been missing so much. It is not rosy. It is not an easy dance to master. And we have been stepping backwards into the darkness…. but I know that the stars are there even in the dark….. And I know you are all there, even when we do not see you. We feel the depth of the support, even if we cannot tell each of you individually.  We would not be here, still fighting, without you.  Beauty in pain.  It is real. We love you.  Keep praying, chanting, dancing, singing, sending energy, sending love.  We feel it and know you are the source of our strength.  Thank you with all of our hearts….. YOU are the true heroes….. And that is why we are still here, still getting up, continuing to dance forward…