a little April, ’23 update from ashlee

Hello my beautiful, kind, generous, love-filled angels,

When I first started writing these updates, there was no real schedule. No timeline to my bulletins. Whenever it felt right, I just poured out the latest news about Michael from our Nicklaus Children’s Hospital oncology/BMT world. It felt temporary. A glitch in our life. Hoping that by the time the next news flash came around, it would be to let you know it was the final episode, for good reason. Michael was healed. Thank you with all my heart for the love, thank you for the incredible support, we would not be here without you, but this is mom signing off because we would now be heading back to our life BC (before cancer). 

Unless this is your first time reading an update from me, you know this is not how it’s played out. Not even close. The glitch became a chapter. The chapter became a short story. The short story has turned into a novel. I apologize if my analogies have been inconsistent. I have gone from cha cha dances to roller coasters to curvy paths and bumpy roads. I have talked about airplanes, oxygen masks, butterfly wings. I have compared Michael to a superhero and a wise old grandpa, and our care team, including YOU, to angels, magicians, and Santa Claus. So many mixed metaphors. Chemo brain does that. And yes, second hand chemo is a real thing. Ask any oncology parent. But the chapter-turned-to-novel-thing does seem to be a comparison that resonates with me these days. The last 33 months have been enough for a full-fledged, hardcover book. With lots of chapters. Maybe a movie or mini series. Yet we are still here. And that is also miraculous. Magical. The novel has pages that are still being written. We have been part of far too many stories that haven’t had enough chapters. Stories that ended too soon. So, we are grateful that Michael’s book has more pages coming. To be continued, as it were……

We are strangely adapting to life and the list of complications that have been so much more challenging and lengthy than we ever anticipated or believed possible. Michael is still immunosuppressed, which makes some things tricky to navigate. The lines are often blurry, so we go with our gut. Sometimes I am overprotective, sometimes I wonder if we both are too lenient. The lines shift and life is short. We are in this together but he is figuring out his own limitations. At 21 years old, he has lived a lifetime already, and wise beyond those years. The rare chronic graft versus host disease is hanging around, not going anywhere, but it’s stable, as long as he is in this immunocompromised state. So how can we complain? Actually, scratch that, how can I complain? Michael definitely can because being in the hospital for ECP (extracorporeal photopheresis) twice a week every single week IS exhausting, physically and mentally. Some things in life get easier the more you do them, but some things just get heavier and heavier the longer you have to hold them. I am in the chair next to him and I see the effects, even though his chin stays lifted. One of the “OG” nurses, who has been doing ECP longer than anyone we know, told us each ECP treatment is like running a marathon. So far, Michael has run more than 85 marathons in a year and a half. Maybe this puts it into perspective. BUT, the time we spend in the hospital is somehow fun and social, the nurses who share laughter and inside jokes with us, the secretaries who greet us and recognize me by the scent of my essential oils, the committed staff who make it a point to come by, say hello and comment on Michael’s hair, which is a topic of conversation that never gets old. When people visit us in the hospital, they usually don’t want to leave. The human relationship part of this book is proving to be more powerful than chemos and medications and blood treatments. Michael’s labs are still a bit up and down, certain liver labs won’t budge this past month, so let’s see what happens when we talk to his BMT doctor next week and the GVHD specialist the following week. He has lost a few pounds, not a lot, but he is a bit disappointed as he is struggling to gain and maintain weight. He continues PT at the hospital, also twice a week. No news on the dates for his two knee replacements, in the meantime, shoulders and elbows are keeping him from lifting even light weights. Simple movements like putting on a t-shirt or sitting in certain positions hurt, and he gets undefined shooting pains in his back and ribs, but it comes and goes, so we don’t waste time worrying about it. He has found that he can pick up a guitar, and there is no way to express how much joy it brings me to hear him play music when we are at home. If you can’t get the endorphin release from physical activity, music is a pretty good alternative. I know his dad is somewhere watching and sooooo happy that Michael is not only passionately listening to music, but learning to play an instrument. Every week seems to bring additional visits with different specialists, so the schedule is full, but in between the hospital and home, we have kept our focus laser sharp: Purpose. Advocacy. Change. Hope. Love. (You knew “love” was coming.) 

We recently interviewed Andy Shepperd from Project Outrun. We asked him why he created his supercool foundation for pediatric oncology patients and he answered, “I led with my heart, not my head.” In this chapter, I think Michael and I are trying to listen to that lesson from Andy and follow our hearts. And our hearts are leading us to be more open and vulnerable. We have been asked to do interviews, surveys, studies, videos, speeches, to share our insight and knowledge with different groups, in particular teens and young adults, as well as caregivers. Of course. These are now our people. The exclusive club we belong to. Yes, spreading love, but also honesty and truth. We have learned so much, understand so much, and been given so many incredible lessons, the hope is to make it a little better for someone else. Or a little less lonely. As a caregiver I want so much to take away all the pain. That is not realistic and not possible. But making the world a little better, that IS possible… if I follow my heart. 

So here we are writing the next chapter, hoping it can inspire someone. 

YOU inspire me and motivate me every single day to continue…..

I love you