September, 2021, from ashlee

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…….