January 2023, from ashlee

To my beautiful, beautiful, dear friends,

I think that every update tends to have a kind of thread or theme. Not really on purpose, but it just kind of happens, depending on what we are going through. Since Christmas, our recurring theme seems to be gratitude. Gratitude and love. Both have always been there, but I feel these words resonate in my heart so much lately. And I hear these words out loud in Michael’s vocabulary more and more. Maybe because we are doing more interviews. More podcasts. Talking to more people. Tiktoking and youtubing more. Really trying to connect emotionally and verbally, even if in-person is not always an option. As a mama, a parent, an educator, I have tried to spread love and teach appreciation and perspective, but life is a much better teacher. Way better. Especially a life that has been through so much, that is so fragile and vulnerable, but all that vulnerability resulting in so much strength and power. And love. Always love.

Last month we were given the hard news that Michael’s avascular necrosis has deteriorated his bones even more. We can thank those life-saving, life-changing steroids. In February we will meet with the orthopedic surgeon and look for some future options. Hopefully, not-so-distant-future-options.  It has been hard for this athletic kid, who did his best to exercise his body throughout chemo, radiation, transplant, surgeries, hospitalizations, and more. I have videos of him in a wheelchair lifting 3 pound weights. That is Michael. So the AVN makes this piece of the healing puzzle a bit more complicated. He can no longer lift weights, no longer bike, but we walk. We hit the beach in the evening when the sun is setting, to keep his skin safe from the rays that will aggravate his skin GVHD, and bad knees and all, we plow through the sand, trying to get his heart rate up. Work his lungs, his leg muscles, his heart, his soul. My soul, too. We are so incredibly grateful that we live close to the beach. Grateful that we live in Miami. Grateful that he CAN walk. Only 8 months ago just getting his feet into the sand was a challenge. So right now, those evening strolls are the best for him, physically and mentally. Swimming in the pool is going to be added to the routine, on the days when his port has healed enough after having been accessed for ECP. Every once in a while, we squeeze in another form of healing, submerging into the ocean. Vitamin Sea. The best therapy, although the bacteria keeps us out most of the time. But quality of life must win sometimes too. And we need the ocean for our souls. And if you know me, you know we continue to dance. On the daily. Whatever that entails. It is not always pretty, but it sure is the best endorphin release ever.

Last week we met the oncology/GVHD pulmonologist at Sylvester who quietly surprised us with her kind, lovely manner. She was a positively bright human who took time, listened to his lungs, but listened to his words, as well. She asked the right questions, and gave so much hope for options, if Michael’s lung restriction were to worsen. As of now, his lungs are restricted, but no labels. We know after so much cancer treatment, after all he has been through, his lungs, just like all the other organs, have been a bit beat up. A bit hammered. Abused through no fault of their own. Chemotherapy is not the targeted treatment we wish it could be and that we have hopes it will become. Neither are steroids. Again, the balance of survival vs. side effects. Survival has won and survival has become “living”. Not only “living”, but having purpose and meaning every day. We are grateful to share this message of hope and love. Pain, yes. Body pains and emotional pains. But beauty, hope, love, gratitude, too. 

So January has been a month to concentrate on Michael’s continued GVHD treatments, look for new solutions for the avascular necrosis and gastroparesis, and the biggest focus has been on touching the lives of other cancer survivors, families, caregivers. We are constantly busy, constantly occupied, as we are either in the hospital for treatments and doctor appointments, or holding out our hands to others who need some understanding. Often we are doing both at the same time. We started sharing this story and our “lessons” so organically and it seems to be driving us to a brand new purpose. We have embraced our new roles as guides for others going through similar cancer journeys, similar struggles, or simply life. Because cancer has taught us so much about life. Not just facing a disease, not just navigating oncology struggles, but how to live. We were so blessed to be guests on the Rachael Ray Show in early January and it was inspiring to see the impact of one 21 year old kid and his mom. Because of course, the truth is, it has never been just about us, it has always been about you and how you have been there for us without fail. Without exception. Whatever we have been going through. Sharing our experience has been like sharing a love story. Sometimes heart-breaking, sometimes humorous, sometimes dramatic, always real, always relevant. 

Thank you and we love you. I love you. As long as you are there, I will keep sending you these messages, because you and our connection with you, are the reason we are still here and why we can continue to rise up and do good in this world. Our goal.

Love and so many magical hugs,

ashlee