One Year Anniversary of Michael’s BMT, from ashlee’s side

It is October and that means Fall and Halloween, hurricane season is almost behind us, basketball season ahead of us, school schedules are finally becoming routine.  But for me and our tiny close knit family of 4, this October also means the anniversary of life, a first birthday, new DNA, and another huge milestone realized.  It is so hard to believe that it has already been one year since Michael’s transplant.  It is equally difficult to grasp that it has ONLY been one year.  Have we not lived an entire lifetime since October 27th, 2020?   In the last 365 days so much more than blood counts and cells and DNA have changed.  The transformation is physical, mental, spiritual.  And not only for Michael.  The butterfly effect seems to have delicately, gently, softly, and sometimes quite fiercely and forcibly, touched all of those around us.  At my age I should probably know to speak only for myself, but I cannot deny what I see.  Friends, family, people we know through social media and the podcast, they are moved.  In a good way, I think… maybe in the best way.  In my house, ok, no way are we even close to perfect, but the little things, they just don’t get to us like they used to.   We forgive ourselves for sitting on the couch and watching Star Wars or Avatar or The Office for the hundredth time.   We laugh more.  Crazy, right?  Even through this painful time.  We dance more, too.  We cry openly, but bicker less.  We engage in conversations that take time to develop and keep us from doing things we “should” be doing but that enlighten and challenge and make us think and feel.  Conversations with each other, with the cat lady on the corner, with nurses, doctors, older people, children, people we love, people we just met. We question the meaning of life, if not to connect and share with others.  Gosh, I sound like I am preaching our goodness and grandeur and wisdom, but I promise I’m not.  Honestly, the more we learn, the more I learn, the more I am humbled by how little I actually know. How much further I want to go in my own evolution.  Ironically, I am grateful for this past year. We have already shared our new perspectives, and too many of our “lessons learned”, so I really will get off my soapbox right about now.  But as we come to the end of this first year of new life, the hard lesson today, maybe the hardest one so far: patience.   And in our world of Amazon Prime, Uber, and on demand movies, patience might be a little less necessary for day to day conveniences, HOWEVER, the big things, the meaningful things, still take time.  Relationships. Art.  A new skill.  College applications (yes, I have a high school senior at home!).  Healing from a Bone Marrow Transplant.   The last one especially.   Being patient seems simple enough, all you have to do is wait.  You can even google ways to increase your patience.  Breathe, take a walk around the block before dessert (ha!), wait a day to make a purchase, meditate, etc….. These are great suggestions and we really do try.  Certainly we knew this was not going to be an overnight process, but Michael has had extra time added, and not for bad behavior.  I remember after Michael’s transplant, the days and weeks following the BMT, we would receive the kindest messages of congratulations and sincere joy from some of the lovely people in our lives.   Michael had made it through transplant, he had survived, his cancer was in remission,  and now he could “get better soon” and go back to normal!  I think I would have reacted the same way, had I not lived this past year with him.  The thing is, a transplant is not like a cure or antidote.  It is not a sure thing, and it is definitely not a quick fix.   Come to find out, it is a lifelong commitment.  When Michael first went home from the 5 and a half week stay at Nicklaus for his BMT, we had a tentative schedule, a kind of outline.  Barring any complications he would return to the BMT clinic 3 times a week for the next few weeks.  Then, still barring complications, those visits could be cut to twice a week.  Then once a week, and so on and so on…….By day 100 post transplant, for us, February 4th, 2021, the immunosuppressants would be, could be,  weaned.  By the 1 year anniversary, the goal was visit the clinic for blood work only once a month, maybe less.  It sounded like a reasonable plan.  However, unless this is the first update you are reading from me, you know that Michael did not follow this timeline.  He did not “bar any complications”.  Not even close.   He has had lots of ups and downs, plenty of unexpected hospital admissions, ER visits in the middle of the night, and to this day, he is (we are) still in the hospital for treatments 4-5 days a week.   The once a month thing, well, we know it will happen, just not yet.   Now you get where I am going with patience.   We have needed it.  We lose it.  We get told to have it again.  Over and over.  In Michael’s vocabulary, patience has almost become a 4-letter word.  I think it is harder for him than for me.   I am older, I have already done a lot of really cool stuff in my life, I am a MOM, and we have an odd way of putting our kids first (I am not tooting my own horn, that is ALL moms), plus, I am not the one suffering physically.  I am socially isolated out of choice, not because my life depends on it.  For me, a couple of years of evolution, of learning, of gratitude for every day we are ALIVE, and the bonus of so much precious time with my kid (and actually, more time with all three kids in a weird sort of way), it feels less frustrating.  Do not get me wrong, I want him healed.  Yesterday!  More than anything in the world, I want him to feel good and strong, whether that is physical or mental or spiritual, I don’t care.  Well, of course, I do care….. in my wish upon the stars, he has a good combination of all 3…… and he really is doing well.  After so many life threatening moments starting July 2020 facing his bleak diagnosis, then his crazy hard treatment plan, the transplant, the 3 types of GVHD, the TMA, the newly diagnosed life-long avascular necrosis throughout his body, the continued liver GVHD, after all these complications I had never heard of in my life, he continues to climb up, to stand up and dance. Maybe taking more steps forward than back.   And he is here for the huge milestone, the one year anniversary of his analogous bone marrow transplant from a non-related, anonymous donor.   While he is not ready to ring any bells yet, I cannot imagine a world in which he does not return to the ocean and in-person relationships, it is just requiring a lot of darned patience.   I started writing this with the intention of giving you the down-low on his condition and his treatments, but you know, maybe it is not so important.  He is still working on healing.  Our full time job continues to be the daily hospital visits (and the podcast!).  His ECP blood treatments will continue until his liver can handle it’s job alone, probably a longer detour than we thought.  But on October 27th, 2021, he will celebrate his new first birthday.   We will celebrate the far-too-many-to-count moments that have made this year beautiful, hopeful, interesting, fulfilling, humorous, lovely, educational, terrifying, wonderful.   And more.  Of course, always more.  Happy 1 year to my Michael, to my Steven and my Jennifer.  It is definitely a group effort, an anniversary of all of us, all of you.  Thank you with all my heart for being part of this first year.