Morgan has been in NYC for a few weeks getting some scans and looking at options. Her scans were worse than before, the disease is extensive in her bones and bone marrow. She’s been dealing with increased pain, and general fatigue. I haven’t updated because I feel there is so much to say with no good way to say it. Dr Modak let us know that, due to her falling blood counts, he doesn’t have many treatment options to offer Morgan.
We have decided in addition to repeating the treatment she received in February, Morgan will get some chemo this week, then receive her last bag of stem cells as a ‘rescue’ for her bone marrow next week. We hope the treatment will lessen her pain, and we hope the stem cells will take hold in her marrow, growing into the blood cells she needs.
This is a tough road, it always has been. We have been doing this a long time: twelve years of constant treatment develops into a lifestyle, a chronic disease finding it’s way into a normal life. I know it is sad to read, it is sad to think about. This is our life every day! We are sad, we are mad, but most importantly, we are convicted. We follow Morgan’s lead, this is her story, we love her and support her through everything she chooses to do. With that comes all of the emotions you could imagine, and some you couldn’t. But, I want you to understand: WE DON’T LIVE THERE. Fear, anger, and sadness do not take up residence in our hearts and our minds. What would be the point of all this?
We experience those emotions and then let that shit go.
We live in love, and fun experiences, debates about politics, learning about new things, being together, and sometimes tears, but always living. Moving forward, whatever that looks like at this moment, and then the next. None of us know what tomorrow will bring. Morgan chooses, we choose to live in the moment, making the best decisions we can with the information we have, and unapologetically live life.
As unusual as this life is, we are like everyone else. We love having friends text about the weather, spending time with those who make us laugh, hearing about others hardships because, we want to help others, too.
Please don’t be afraid to text us: we aren’t going to break under the pressure of a friendly message😊.
We so very much appreciate the support we have received; our village is strong, and we are thankful for our friends and family now that we need them more than ever.