September 18th, journal entry from Michael

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.

Michael and Mom Talk Cancer: Episode 5, the Mental Struggles and Coping

Summary

In this episode, Michael and his mom talk about the mental struggles that have gone along with his cancer diagnosis, bone marrow transplant and the complications he still faces today.   They discuss how these health challenges have affected them emotionally, and how life has taken on a different meaning, and each struggle seems to come hand in hand with a new life-lesson.  Not always easy, but as Michael says, “he would not have traded this for anything”.  Michael and his mom Ashlee find ways to cope, from working out, to speaking with a therapist, to sharing their story, to building legos and playing with their kitty cat!   

Transcription

Lessons

We thought recovery would be easy for Michael, a strong, active 19 year old.  But maybe Michael is not the speedy, athletic hare sprinting to perfect health that he appeared to be.  Maybe he is the deliberate, steady tortoise.  And didn’t Aesop’s tortoise win the race?  His recovery has not been one miraculous moment, I cannot even place my finger on a particular “turning point”, but it has been a series of micro-improvements.  (Is that even a thing?)  Accepting the challenge of each complication, each treatment, each medication, with consistent motivation and even when we get sad or anxious, angry or frustrated, we refuse to get lured to the dark side permanently.  “Sometimes just getting up and carrying on is brave and magnificent”, says Charlie Mackesy…. And we agree.  And we do.  Get up and carry on.  So many life lessons, one after the other, have been hurled at us.   We are not the eager students taking the popular classes we signed up for, but still, we seem to be getting the education we need, required courses, core curriculum.    All I really need to know, I learned when my child was diagnosed with cancer.   Maybe that will be the title of my book?  Ha!  Honestly, it is pretty accurate.   Maybe these are my first realizations, and some of them are just ridiculously obvious, but still so significant:

  • Looks don’t matter.  Really.  We love Michael with his pale skin, bald head and his skinny legs just as much, or more, than when he was tan and blond and muscular.  (uhm, and hopefully I am loved just as much with my extra wrinkles and gray hair!)
  • Every moment counts.  Duh- i know this one is way too dumb and obvious, but still, July 13th, 2020 we were planning our next surf trip.  July 14th, 2020 Michael was admitted to Nicklaus Children’s Hospital with a life threatening cancer.  
  • People are so good.  So, so, so good.   Beautiful.  Amazing.  Generous.  Good.  
  • Tiktok is actually pretty fun, even for a 52 year old.  Kind of like cake.
  • Throwing up sucks, but keeping it in sucks more.
  • Be flexible.  Sometimes you think you are something, and that something defines you (like dancer, singer, mommy and me music teacher, OR surfer, sailor, student, part time model) but then life changes.   And then who are you?   Who are you? Really? Adapt.
  • In spite of Covid, figure out who you can hug.   Even if it is your kitty cat.  And it better be your kids.  Especially if they are teenagers.
  • You are stronger than you think.  You can do anything.  Even keep to a diet that includes only white bread and rice.  No sugar.  No fat.  No dairy.  No CHOCOLATE!  Even if the challenge includes radiation.  And chemo.  And a transplant.  If you are given the challenge, you can handle the challenge.  Do not doubt your strength and power.   
  • There is no place like home.  Especially when you have been in the hospital for weeks….. Or days….. Or even hours…… 
  • Work out. It helps. Unless you are REALLY tired.  Then rest and watch The Office 🙂 
  • Meditate… or pray… or chant….or build legos……or DANCE!  Find something that takes you out of your physical body, out of your head, and into your spirit, your soul, the angel part of you.
  • The silver lining is real.  So is the dark cloud, don’t get me wrong.  Blindly optimistic is denial, I think.   But going through hell, and surviving?  How can you NOT believe in rainbows and unicorns?   I cannot NOT believe
  • Even when you are at your worst, it is probably still worse for someone else.   And even if you are convinced that you win the trophy for the lousiest day, someone else’s trophy is bigger.  And their day was lousier.  At least you are loved.  By a lot of people.   If you are reading this, definitely  by ME!

Wow.  I didn’t mean to give ANY lectures or reveal the private education that we feel we have had to embrace.  Especially because as soon as I write one thing we have learned, I think of at least 10 more.  And this is probably more than enough…. For now…..

Michael and Mom Talk Cancer: Episode 4, the first 100 days

Summary

Going home from the hospital after Michael’s life saving Bone Marrow Transplant was not as simple as they had anticipated.  Just getting in the car after spending over a month at the hospital was challenging and eye-opening.  From being reunited with their kitty cat, to facing the million and one rules they had to follow to keep Michael safe from bacteria in his completely immunosuppressed state, from celebrating Christmas Eve at home with his siblings, to being readmitted to the hospital with graft versus host disease again…. and again….. and again….. somehow this mother and son still manage to laugh as they share their inspirational story of how cancer and a bone marrow transplant changed their lives forever and for the better.   Those first hundred days include shout outs from the Miami Heat players, tiktoks with nurses and doctors, and honest moments of love and struggle.  Listen to the next episode of this painful but beautiful story, and hopefully you will be inspired, just as Michael and his mom have been inspired to share with you…..

Transcription

ashlee’s perspective, 1 year later

Remembering July 14th, 2020.

It is hard to believe that it has been just over a year since Michael arrived at Nicklaus Children’s Hospital as an athletic 19 year old who simply wanted to know why he felt tired all the time.  He was tall, muscular, blonde, tan, mischievous eyes and grin, all the sass and insecurities of a middle child including not knowing exactly what he wanted to be “when he grew up”, but still, like-able, love-able, funny, annoying, charming……a sweet kid with a genuinely good heart who had his whole life ahead of him.   You know what happened next.   A bone marrow aspiration and biopsy.   A cancer diagnosis.  Hepatosplenic Lymphoma, not a very treatable or well-known disease.   The documentation is slim.  The survival rate is unclear at best.  Average life span, 8 months post diagnosis.  But I did not know any of that on Bastille Day, 7/14/2020, thank goodness.   I did not think about the next 8 months or 8 weeks or 8 days or 8 hours.  I only knew that around 4:45pm on Tuesday, July 14th, 2020, we were told Michael needed chemo and at that moment, everything stopped.  And then it started again but nothing was the same, even though inside of us, in our core, nothing had really changed.    He was still a playful middle kid and I was still a goofy, energetic mama.  2 weeks later, his brilliant oncology team added radiation and a bone marrow transplant to his treatment plan.  And for some inexplicable reason, Michael was given a 2nd chance at life.   As I look back on this year, so many beautiful moments stand out, so many miraculous events, so many angels who appeared when we needed them, so many opportunities for Michael, and for me, to try to live up to this gift of life.   I have had people tell me they admire us, because we have stayed so positive and optimistic.  I do not think we had a choice.  The option of giving up or giving in, it just never even presented itself.  Not that it has been easy or smooth or carefree….. but if I look hard, if I do the investigating and go right to the source, to ground zero, that day, July 14th, 2020, when Michael had that tiny amount of bone marrow extracted from his lower back and the pathologists studied it under some almighty microscope and saw those cancerous cells, and then he was wheeled in a hospital bed from the 2nd floor outpatient infusion unit to the 6th tower inpatient oncology floor, we cried for a moment, but then we looked out the window and saw the most beautiful sunset.  I still have a picture of it in my camera roll on my phone.   Somehow that night set the tone for the next 365 nights.   We were still us.  We still had our inside jokes and songs that made us dance.   We could still laugh.  We still had love and we had hope.  We had the sunset. Whatever was ahead of us, it could not change our souls or our spirits.   Or if it did change us, maybe it was only to enhance who we already were.  Make us better.  We found out how vulnerable Michael’s physical body was, but we also found out how resilient he could be.  You know how there are urban legends of mothers with superhuman powers that lift cars to save their trapped children?   I am not sure we have that capability, but something does happen when you have to face your own, or your child’s, mortality.  And this magical thing sort of happened not only to me, not only to Michael, not only to Jennifer and Steven, but to everyone surrounding us.   We have felt a communal super strength.   And just like the sunset, this force has defined the past 12 months.    We woke up on July 15th, 2020, with the same sun rising on the other side of the tower.   I know how cliche this sounds, but there was some kind of reassurance in that dawn, some kind of predictability.   I am lying if I say this year has only been optimism and laughter, of course not.  We have been through never-ending, difficult days, when I just prayed for the sun to set.  We have spent terrifying nights that seemed to last forever.   I have seen my child in pain and not be able to help him.   I have been separated from my other two children when all I wanted was for us to be near.  We have been through the immediate side effects of chemo, we know about the long term effects of radiation.   I watched Michael be brought to the brink of emptiness so his body could make room for the new stem cells.  I have seen him gravely reject and then ever so slowly come around and allow his new marrow to engraft.   I watched him start the healing process, finally go home, and then return to the hospital with acute graft versus host disease, GVHD.    Not once, but over and over.  His healing is taking so much longer than we had expected, but he is healing.  One year later, and he is HERE.  Through it all.   Maybe you have seen our videos.  They do tell the story.  A lot of joy, a lot of singing, dancing, laughing and so much metamorphosis, suffering and love, mixed in.   For all of us.  And Michael, well, he has not so much changed, but perhaps evolved..  His new DNA has given him purpose.  Isn’t that the goal in life?   Not that it is over……. The progress and the pain.  Even now, Michael is facing a new bout of chronic GVHD, both gastrointestinal and liver.   Maybe a long-term complication.  But how can we complain when his life has been spared?   And so many others have not.   We are hammered by perspective.  So now we embrace new medications, shown in trials to work miracles, and we bide our time this next week to see what happens.    His doctors prepare alternative plans, and we continue to write, watch basketball finals and work out in our home.  Still immunosuppressed, still quarantined, but hopeful.  Optimistic.  And definitely changed, but still the same.   Just like there is B.C. and A.D., we have a timeline in our house, too.  It is divided by before Michael had cancer, and after.  The pivotal date, July 14th, 2020.  Before Michael had cancer I thought I loved my life, I thought I was blessed, I thought I appreciated people and family and being alive.  “After” I realized I had barely scraped the surface…. I grasped how much deeper it could go.   On July 14th, 2020, we were able to see the beauty in the sunset…… And today, tonight, we are so grateful to be here, and to watch the sun set again.  And laugh.  

Forever grateful for YOU, who have changed our lives with YOUR love and support,

ashlee

Michael talks perspective

What is perspective?  I guess it’s the way we look at life and appreciate what we have. It seems like this past year I have been given a lot of perspective on life and I have had no choice but to accept it. For a normal person, waking up every day and being cancer free is not something that would even cross their mind, not something they would even think about or have to acknowledge, but for me it is something I have to acknowledge every single day and be appreciative of. Life is not back to anywhere near normal for me or anywhere near where I want it to be, but it could be worse. I have a lot ahead of me in the next year, which includes at least 6 months of ECP treatment for my GVHD. Which sucks. It is not what I want but these are the cards I have been dealt. I have no choice but to keep on marching on and keep on fighting. I am constantly being knocked down and teaching myself to get back up, knowing that I will be knocked down again, and knowing that there is no set date for my health to return. Knowing that I have to take every day as it is and knowing that I cannot live in the future and just wait for this year end. I must live now because no matter my limitations life is still going on and the world is not going to stop just because I cannot do much because of my immunity and health issues. I always knew that life after transplant would be very trying and difficult mentally because of the limitations of what I can do until I gain immunity again, but I did not know it would be this long, this intense and this difficult. But it has been. Upon my diagnosis, I was so sure that after my transplant I would be fine and back to a normal life in no time, but here I am 10 months later and it seems the universe has other plans for me. I have been taught so much perspective in this past year and have learned things that people do not learn until they are too old to do something about it. As a 20 year old fighting every day for my life I have learned that health is never guaranteed and neither is anything else in life. I see people complain daily on social media about the world’s smallest problems, and it tends to frustrate me, like why are some people just not grateful enough for what they have? I would do almost anything to be in their position and have the health and immunity they have, but I would never trade positions with anyone or ever want to change my perspective and view on life, because all I have gone through has changed me and made me someone I never thought I would or could be. I am told that I am an inspiration to others because of my strength and perseverance during such a difficult and intense time in my life. I never thought I would be here in this situation with loads of health issues and a future that is not guaranteed, I was a healthy athlete who did everything he could to not have health issues, I never smoked because I did not want lung issues, I barely if ever drank, because I did not want liver issues, I never did anything bad for my heart because I never wanted heart issues. Yet here I am at 20 years old, getting pulmonary function tests every 3 months to test my lungs because of all the chemo and radiation I received, here I am with liver issues because of the GVHD I have in my liver, and here I am with a higher risk of heart disease because of radiation. My point here is that life is unpredictable and that sometimes we have to look at how lucky we really are. I will take all these health issues on and be fine with them, as long as I know my family and friends will still have me here, as long as I know that my fight is helping motivate others and give them a new perspective on life and can make people inspired to do everything they can to be the best person they can be. The fact that I am alive today after reading about my diagnosis and health issues is rather insane. It’s just a weird thing to think about, people can be completely healthy and then have a freak accident and pass away, for example what are the odds of dying from falling and tripping as compared to getting cancer? I am pretty sure most people would rather take their chances and not choose the option of cancer, but life works in weird ways and anything can happen to anyone at anytime. So my point is my situation is not the best, but I still have hope, I still am alive, and I still feel good, despite the gigantic pills I have to swallow every day, the constant hospital treatments/ tests/ admissions, and so much more that goes along with my health every day that people take for granted, I am still here, and I am still writing, and I am still smiling, so make sure today you take a good look in the mirror and tell everyone you love and appreciate how much you really care for them, because life is truly about perspective and when life slaps you in the face and constantly knocks you down you have no choice but to get back up stronger every time. 

how it started

Our family is made up of three kids, Steven 21, Michael 20, Jennifer 17, and me, Ashlee, the mom. My husband, their dad, died of Large B Cell Lymphoma 5 years ago, May 12th, 2016.    Ironically, Michael’s cancer and his dad’s, are not genetic or even linked. 

The kids grew up on Miami Beach, with the ocean, the boys sailing and surfing, Jennifer dancing, like her mom. Both Michael and Steven were part of the Olympic Development Sailing Team and they traveled the world competing as windsurfers. We missed their father, but it was a beautiful life…..

Summer of 2020 Michael was feeling especially tired, we thought maybe he had Covid, but he had none of the other symptoms of the Coronavirus.  Cancer was not anywhere on our minds.  July 14th, after a routine blood test that led to a bone marrow biopsy, he was diagnosed with Leukemia.  On August 3rd, it became more specific, Hepatosplenic T-cell Lymphoma.  They told us not to look it up on the internet.  We did not.  It is a rare lymphoma, and the statistics are pretty frightening.  Michael went through 3 fierce cycles of chemo, then radiation, a little more chemo, and finally, a Bone Marrow Transplant on October 27th, 2020.  Steven and Jennifer were tested to see if they were matches, they were not, but Be the Match came through with a 100% match- a MIRACLE, in fact.   

Since the transplant Michael has had a lot of setbacks, complications, etc…… he experienced engraftment syndrome about 10 days after transplant- life threatening, but pulled through, fighting all the way.   He has been re-admitted with GVHD (graft versus host disease) of the skin, of the GI, and now of the liver. He has dealt  with TMA (thrombotic microangiopathy) and AVN (avascular necrosis) of the left knee. He is still fighting but we are stronger together, always…..

We started to share the story on social media and realized that opening up not only helped us, but it also inspired and perhaps encouraged others.   So now we share our story here.   Michael and mom, telling the truth, the pain, the humor, the laughter, the life lessons and the love that have been our constant…. Here we open our hearts to you…… we hope you will join us….

Michael and Mom Talk Cancer: Episode 3, the Transplant

Summary

After chemo, the next step in saving Michael’s life was the BMT, the Bone Marrow Transplant.  Michael and his mom share the beautiful moments, like Michael’s first breath of fresh air after transplant, and the funny moments, like how many more wrinkles appeared on her face during that 5 1/2 week stay in the hospital!  But they also talk about the serious moments, like the night when they were not sure Michael would make it to the next morning.   More lessons are revealed, including the importance of really and truly appreciating each moment.  Every shower.  Every breath. Every smile and moment of laughter.  Their relationship with the doctors, nurses and each other pulled them through this emotional and of course, physically painful time.   Join them as they hope to inspire others with this gripping story.

Transcription

Michael and Mom Talk Cancer: Episode 2, Chemotherapy

Summary

Michael and his mom, Ashlee, talk about chemotherapy, not only the physical changes and difficulties, but also the mental and emotional challenges.  Michael, a 19 year old athlete and college kid, was officially diagnosed with Hepatosplenic T-cell Lymphoma on August 3rd, 2020.  He started chemo immediately, and the lessons began rolling in.  From realizing the truth in how little looks matter, to appreciating really and truly family, friends, LIFE, to being so incredibly grateful for the new relationships that were being forged at the hospital……..  This episode dives into so many emotions, both humorous and also painful, from both the perspective of Michael and his caregiver, his mom.  Join Michael and Ashlee on the next part of this journey: chemotherapy.  

Michael and Mom Talk Cancer: Episode 1, the diagnosis

Summary

Michael was diagnosed with Leukemia on July 14th, 2020, in the middle of Covid quarantine.  The exact diagnosis of Hepatosplenic Lymphoma came almost 3 weeks later on August 3rd, 2020.  This was shocking and definitely life-changing for a 19 year old kid who had grown up in a healthy family as a windsurfer, surfer, gym-goer.   Michael describes how he felt, some of the thoughts that went through his mind, and how this changed his life in a moment.  Michael’s mom, Ashlee, shares her perspective as well, as she hears that her son needs surgery, chemo, and a bone marrow transplant.