March Love and Lessons, from ashlee

Hello my beautiful friends and forever family that I love and perpetually feel the oh-so-strong desire to thank, hug, hold, and bring into our continued story of hope,

Forgive me for starting with words that are not my own, but I can’t get this Joseph Campbell quote out of my head: We must be willing to let go of the life we planned so as to have the life that is waiting for us. There is another version of the same quote that says to “accept” the life that is waiting for us. I am not sure which one is accurate, but they both work for me. Maybe Joseph said it two ways. And acceptance is one of our BIG themes. Especially lately. One year ago this month, March 2022, marks the moment that we did not give in, we did not give up, we did not “lose a battle”, but we did truly accept and surrender to our new life. Letting go of the “life we had planned” in order to “have the life that is waiting for us.” I did not imagine my future as a cheerleader caregiver, not only for my son but for other caregivers out there. I did not think I would be writing a book revolving around cancer. Hosting a podcast with Michael about our journey together. And possibly legally changing my name to “mom” (just kidding!). And certainly Michael never thought he would be an advocate and such an inspiring motivation for cancer survivors, teens, adults, pretty much anyone who hears him speak, in person or through social media. This kind of goes along with another lesson I have been learning about: dharma. You can not be anything you want, but you CAN be everything you are. That is way deeper when you let it sink in. We really are trying to embrace who we are. At this moment. And it has changed. We have different strengths, different limitations, different knowledge than we did before hepatosplenic t-cell lymphoma turned our world upside down and all around. As much as I loved every moment of my beautiful career and as much as Michael loved his college/surfer/social life, we cannot go back. Even if we wanted to. Instead, we are working to be everything we are right now. We have so much passion for connecting, speaking, sharing, lifting up as many as we can through this story. Our energy has been going in that direction and maybe, just maybe, the butterfly effect is real. And the flutter of our small wings, does make a tiny difference in the world. Maybe we can make the world a little better. 

In the last update, we were doing our best to live in the present, practice mindfulness, while anxiously looking forward to the 3 month check in with the GVHD/BMT specialist, more pulmonary function tests, and new MRI’s of Michael’s knees before meeting the orthopedic surgeon again. It was a lot to wait for. And we are human. Not butterflies. February was the month of love, March was the month of trying not to freak out. I am sort of joking, but not completely. First on the itinerary was the meeting with the GVHD (graft versus host disease) doctor. We love this doctor. He is young, smart, funny, and like Michael, he has great hair. But, he kind of makes Michael nervous, too. Not because he is scary, but because he holds the keys to Michael’s schedule of ECP, of how immunosuppressed he is, of do’s and don’ts, can’s and cannot’s. We had been tentatively, cautiously, quietly excited, because in January, this same doctor had reduced the bi-weekly blood treatment, ECP, to twice a week every OTHER week. It meant a short break for Michael’s body. A little rest between treatments for his constantly irritated port. A moment of respite away from the hospital. Time to breathe. The time also meant Michael could get in the ocean every once in a while. A few of you saw videos of him surfing small waves one day. A kind of miracle, or at least a huge blessing. It went on for a few weeks at this pace, but then, as we watched his labs, his liver enzymes started to creep up. Not quite in the danger zone, but getting there. Before things could go from not ideal to bad, in early March the ECP was put back to twice a week every week. It hurt Michael’s feelings a little bit, I can’t lie. That day we went home and he cried a good cry. I held him tightly and I could feel my heart in my throat. As much as I am there with him at every turn, as much pain as a mama can endure watching her child suffer, as much as I try to understand, how can I? I am not the one getting stuck with giant needles twice a week. And everything else. You know the long list by now. But the tears helped. The bright side, since ECP is back to twice a week every week, his liver is responding, cooling off. The lesson, his new bone marrow is still working on accepting his body and his organs. At least it is reassuring to know that ECP is working. Not just a futile punishment. A non-toxic solution, although time consuming and not always so comfortable. The recent pulmonary tests show lung restriction, it is not great, but not worse than his previous tests since the GVHD first started. We will take it with a smile and even a sigh of relief. The MRI’s of the knees were not as cheerful. The avascular necrosis is pretty much everywhere, and in his knees it’s a perfect stage 4, meaning the only solution is double knee replacement surgery. The surgeon wants to wait a little longer, maybe 6-8 months. Try to strengthen his leg muscles with PT as much as possible, while being careful not to make the collapse worse. It is a fine line, but thankfully he has knowledgeable physical therapists at Sylvester (UM) who understand his limitations and his abilities. We are grateful he is back to PT twice a week. It is a full work week schedule, but we love our nurses, doctors, therapists.

Our goals right now, speaking more. Leading our support groups. The podcast. Writing. Connecting. Sharing. Serving who we can. Especially in the cancer community. So many are too isolated and alone. Especially AYA’s (adolescents and young adults with cancer) and caregivers. They need a little extra love. I believe the reason we feel this need to help others is because we have been so supported by you and our incredible doctors and nurses that are more like family than a medical team. It is so hard to understand if you are not living it, but at the very least, we have not felt alone. And when we did, when we do, we know we have this huge flock of humans loving us. You. Ready to lift us up. Even from a distance.

I swear that I try not to bore you completely with repetitive content. But every time I start to write one of these updates, my heart seems to just open up with so much vulnerability and honesty. I want to pull you all in, those of you who are still here, still reading these messages, tell you how I am continually blown away. Again. I know it is what I always say. But, it has not gotten stale. Not for me, at least. I can never ever take you for granted. As time marches forward in this chapter that turned into a short story that is gradually becoming a novel with a manual on the side, I feel like I am taking you along on the journey with me. With us. You are integral to every success, every inspiration, every lesson. As long as you keep reading, I will keep sharing.

I love you so much.