Author Archives: michaelandmomtalkcancer

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…

October 28th, 2021: I am cancer free for over a year now. I guess you would think all is well and I am back to normal. Nope. Normal takes on a different definition now in my life, but not a bad one. I am so grateful to be alive and to have met the people I have along this crazy journey. I have GVHD of the liver as a result of my life saving Bone Marrow Transplant. I had my BMT just over a year ago, October 27th, 2020. To get cleared for my transplant I had to be in remission and cancer free, so I went through 3 rounds of 21 day cycles of chemotherapy. After those rounds of chemo I had radiation, a couple more days of high intensity chemo, and then was in remission and ready to get my Bone Marrow Transplant.

The cancer right now is not the issue (thank god) but the Graft Versus Host Disease which I developed as a result of my transplant has become the issue. Graft Versus Host Disease is a common complication after a Bone Marrow transplant that occurs when the stem cells that were given to the patient, begin to attack the main organs of the patient. This is because this new body is foreign to this Graft and it decides to attack its host, which is known as Graft Versus Host disease (GVHD). In my case this graft initially had attacked my GI tract and my skin, early on after my transplant, sometime in December of 2020. Thankfully, that was resolved rather quickly. Unfortunately, a few months later I developed Liver GVHD, in a more chronic state which has been harder to resolve. Due to medications being processed in the liver, the best option for me is not a pill, it is something else called ECP, otherwise known as ExtraCorporeal Photopheresis. This is a treatment where I lay down in a bed, I get hooked up to a machine and this machine takes my blood, filters out the white blood cells, weakens them under a light and returns them to me in their weakened form. These white blood cells are known to be the cells that are causing this GVHD, and by calming them down, over time, the goal is that they will stop attacking my liver. It is now October 27, 2021, and I have been doing this ECP treatment for 12 weeks now. My liver has begun to improve but it is a very long process and it seems like I might be doing this treatment for the next year or so. I am not really sure, but from what I hear and understand from nurses and doctors, this treatment usually lasts for years. I don’t know my future and I don’t know if soon it will be lowered to once a week or it will stay twice a week, it all depends on my counts and how my liver is doing. I still have a long road ahead of me, but it seems the treatments have been working and I am slowly headed in the right direction. I do this ECP treatment twice a week at Sylvester Cancer institute and I also go to Nicklaus Children’s Hospital 2 days a week for magnesium infusions and for blood work/tests. So I’m going to the hospital an average of 4 days a week. It’s pretty exhausting but I am feeling better overall and always have great experiences at both hospitals. I know so many people who dread going to the hospital, but because of the kind nurses and doctors I have, I don’t feel bad about spending so much of my time there. I feel loved and appreciated every day and that is truly special.

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.

The last update was a whirlwind of information… as usual.  Our lives are not exciting in the travel-to-foreign-lands and climb-the-highest-mountains or surf-the-biggest-waves sense, but our days are certainly not dull.   People ask if we get bored in the hospital or at home.  The answer, a definitive no.  It might not be the adventure we were seeking, especially for a 20 year old, but we seem to pack a heck of a lot of life experience into each breath.  It is more of an inside job. But I think it still counts.  It has been 11 months since Michael’s transplant and it resembles a kind of infancy, starting over, learning so many things from scratch.  Not only for Michael, but for this mama, too.  Mostly, how to BE, and not trying to re-do the past, or try to pick up where we left off, because everything is constantly changing, like water in the ocean…….and we simply cannot go back to who we were before.  Ever.  We have had to change goals, change expectations, accept a new path, learn to bend like a palm tree in a hurricane.  In the beginning, we counted the days post transplant.  Kind of like a new mom with her first born.  Lately we have gotten a little lax on the counting, but just because we are not counting the days, does not mean we have lost hope or optimism or gratitude.  It just means we are trying to let go of dates, let go of expectations, let go of control.  Because we have none, right now.  Well, that is not EXACTLY true.  We (try to) have control of our emotions, how we respond, even though it is not always that simple.   Right now, we are in the hospital 4-5 days a week.  It’s outpatient, we get to go home every night, but still, it’s exhausting, especially for my warrior kid.  On the good days, it’s like a fulltime job without the financial benefits.   Thankfully we LOVE our “coworkers”.   Nurses are more like close friends or family who always know what to say, what not to say, and what to do to make you feel better.  The doctors are giving of time and energy and insight, instead of withholding information, they pull us in and share their knowledge.   Before looking at a chart, they ask how Michael feels.  Really feels.   It is human.  We try not to have “bad days”, but it cannot be helped…. Every day is not sunshine and blue skies.   It gets cloudy, too.  And lately, it’s Florida in the summer: rainy season.  Those are the moments that it is so crucial to have each other to lean on, to balance each other, to hold each other up, or at least grab the umbrella.   The last week has been pretty stormy…… we knew that the ECP treatment Michael is receiving at Sylvester Cancer Center requires patience.  Twice a week 1.5 liters of blood stream out of his vortex port into the apheresis machine to spin, separate, get treated, and flow back to him.  The best part, no medications for his damaged liver to process.  The main side effect is feeling drained and then, there is the inconvenience of living with a vortex port.  Within 24 hours of getting accessed, he cannot get it wet, no showering.   It is swollen and bruised, 4 out of 5 days.   But if this saves his liver, Michael is up for the challenge.  Thankfully, it IS helping, his liver function is better, but his skin is still glowing, his eyes still bright yellow.  So now the expert doctors look into other medications to add, before there is too much permanent damage.  They speak to colleagues, research clinical trials, compare notes with specialists.  Prednisone, a well-known steroid, is the drug most GVHD specialists recommend, and it did the job saving Michael more than once, but his liver GVHD has refused to budge even on high doses of the steroid.  The doctors are now hoping that he can start a new drug, an injection that bypasses the liver, and keeps Michael off the steroids.  Prednisone has already done some pretty permanent damage to his leg.  It seems like the AVN (avascular necrosis) in his knee is irreversible, and he is showing signs of AVN in his elbow, as well.  Hopefully pain management and PT can get him walking comfortably, exercising gently, and my wish upon a star is that he can one day be an active, athletic surfer again.  Let’s see.  For now, a functioning liver, and walking without pain would be enough.  Like I said a few paragraphs back, we are trying not to hold on to who we were before, but who we are now.   We are more aware than ever that Michael is a miracle kid.  He is still here fighting.  How can I not feel so blessed and fortunate and appreciative?  I sometimes feel guilty worrying about a knee when his liver, his life, is still in question.   His hands and feet are constantly itchy, it drives him crazy sometimes.  Especially at night, when he wants to close his eyes and sleep.  It is probably a side effect of his critically high bilirubin, although no one is quite sure.  And who complains about itching?  That sounds so silly.  His stomach is still in turmoil.  His diet is restricted to only a few foods he can handle.  But he is eating.  Not on a feeding tube.  Not IV nutrition.  So again, how can we complain?   So many others have it far worse.  It is all in the perspective.  Quality of life is so important, and lately, I know Michael questions his quality of life.  Especially when he sees his friends away at their dream colleges, playing sports, going to parties, hanging out with friends, stressing over homework not bilirubin, worrying about getting ripped not walking without crutches, trying to hold down beers not dinner, living the life of normal 20 year olds!    BUT, then we get asked to speak virtually with an organization about cancer awareness.  Or we meet with legislatures on zoom to shed light on much needed funding for childhood diseases.  Or we receive messages from people who have been touched by our story and need someone to talk to.  Or we record and share a new episode of our podcast…. because if you did not know, Michael and I have started a podcast and website, “Michael and Mom Talk Cancer”, with the intention of inspiring, motivating, helping others, and doing good in the world!   So we do end up finding a kind of balance between quality of life and purpose.  Purpose, giving back, and not looking back, our goals, as of today…. Knowing it may change tomorrow.  With all our love and enthusiasm we invite you to listen to the podcast, to read the blogs, to share in our narrative of not only surviving, but evolving.   And with all my love I thank you for continuing to be there.  This chronicle is not over…….

Just a little update today… informal…. not perfect… letting you know what’s going on.  

I am 10 and a half months post transplant. I have Chronic GVHD of my liver along with Avascular Necrosis in my leg. For the past 6 weeks I have been doing ExtraCorporeal Photopheresis at Sylvester Cancer Institute, University of Miami, twice a week. I also do labs, blood work, follow ups, and get magnesium twice a week at Nicklaus Children’s Hospital….. which means I have been spending 4 days at least, in the hospital receiving treatments/ infusions. Now starting PT (physical therapy) on the “off” days”. It has been exhausting to say the least and it is a huge challenge. As far as the AVN: it is death of bone tissue due to lack of blood supply, this happened to me because of long term use of steroids in my treatment. Maybe chemo, too. Maybe radiation. I use crutches and a wheelchair to get around now for the past month and this week I will have my first physical therapy session and meet with the Orthopedist who diagnosed me with AVN and did my MRI. I am really hoping that with Physical Therapy I will have a smooth recovery, because being in crutches and in a wheelchair AND going to the hospital 4-5 a week is not very fun. It also makes the quality of life very difficult. It seems like I still have a few more months of being in the hospital this much, so I have a long road ahead of me. I also have to start a new medication next week for my liver because my Bilirubin (which is part of liver function) has not been improving, so my doctors are a bit concerned and would like to add a new medication because we do not want any long term damage to my liver. This new medication is called Anakinra, a subcutaneous injection (shot) I will get 2 times a day.