A May Update: Insurance Denials, a New Clinical Trial, More Time in the Hospital, and So Many Metaphors

May 2025 update

To my dear beautiful friends and family who are always with me, held close to my heart, even during these bouts of my inadvertent “radio silence”,

It has been almost 3 months since my last love letter to you, but for this mama, it feels like ever so much longer. One of the welcome side effects of cancer, every single moment is precious. It makes life fuller. Causes time to slow down a bit. It’s a lesson I try not to forget, even as the day to day tugs at me to get distracted and hurried by the mundane. 

I ended the previous message in March on the hopeful note of Michael starting a newly FDA-approved  immunotherapy infusion in the days to come. Axatilimab. His truly wonderful and ultra legendary GVHD doctor, Dr. Trent Wang, has his fingers on the pulse of every new therapy, drug, treatment, life-style enhancement, tip and trick that can possibly help his chronic GVHD patients live longer, less painful and better quality lives. We had heard about this new immunotherapy from Dr. Wang (AKA “T Dubs”) months ago. Michael’s GVHD has been flaring up little by little since February, a bit like watching the proverbial pot boil. His eyes are more sensitive. His mouth has continuous mouth sores. His body has new markings that show up like patches of thick, stiff camouflage on his skin. His liver enzymes have been creeping up. Not exactly life-threatening today. Not urgent at this exact moment. Nothing is burning on the stove, but it has been getting warmer. Hotter. Simmering. This mama has been trying not to worry. Keeping our life’s perspective from the past almost 5 years in mind. Don’t panic! Remember PTG (post traumatic growth), do not fall prey to PTSD (post traumatic stress). It could always be worse. Every day we are alive is a gift. We are sleeping at home every night, not in the hospital. Michael can eat. He is going to the gym. He has the best doctors caring for him and watching the pot to make sure it does not reach the boiling point. As you can imagine, Michael and I welcomed the new line of treatment, the new immunotherapy, with relief, optimism, hope, and gratitude. The timing was impeccable. The only thing holding us back from the first infusion in March was waiting (and waiting) for the insurance to complete the incontestable approval. Of course, as life seems to go in this nothing-is-sure-but-death-and-taxes world, the undeniable authorization was denied. We appealed. Denied again. And again. And again. Michael’s new insurance has allowed us to continue at Sylvester Cancer Center with his formidable team of doctors and nurses, but that does not mean it has picked up ALL the slack. Since losing Michael’s Medicare and Medicaid at the start of 2025, we are having more than just financial impacts of higher premiums. I have had to accept a few unexpected steps back in our cha cha, as the music seemed to fade out, stop, or maybe just pause. There have been restless nights, realizing anew that I can’t do the one thing every parent desires, protect my child. Now I find myself fighting for treatments that in the past were approved with little or no question. Not insurmountable but these are new hurdles. Since March, I have been training to jump a little higher. Anticipate a little sooner. Raise my voice a little louder. Dance a little bolder, even in the silence. I sent a million emails, made just as many calls, and probably drove some very good people in the healthcare world a little crazy. But remember, I believe in magic, miracles, and our cha cha. And right on time, the music started again, and the steps forward showed up in the choreography as a clinical trial. Not just any clinical trial, a miraculous one that was happening in Miami, at Sylvester, with Michael’s doctor, AND Michael met all the criteria. 

If you don’t know much about clinical trials that is probably a good sign. It means you have not needed one. But just to fill you in with some fun, fast facts, these trials are packed with prerequisites, caveats, restrictions. All for the sake of medicine and science, but we know far too many oncology patients (including my late husband Patrice), who have attempted to get into clinical trials, and were turned away due to what seemed like minor details. Policies are strict, adherence is obligatory. Oh, and location is key. Hence, getting Michael into this trial has been a sigh of relief. You know, “when one door closes a window opens”. This window happens to be far more time consuming than walking through an open door, but isn’t that what makes life interesting? The serendipity and surprises? The occasional slowing down and taking in the scenery? The trial is expected to last 6 months. The pharmaceutical company funding the trial is willing to give it a go for 26 weeks, then let’s see. We are taking it day by day. It combines the latest GVHD immunotherapy (the immunotherapy the insurance denied by the way) with our old friend, extracorporeal photopheresis (ECP), the blood treatment you all must recognize by now from my previous posts. Michael has spent almost 4 years in the hospital, twice a week, with me beside him, receiving ECP. Recently Dr. Wang has been trying to wean him off the time-consuming treatment in favor of the new immunotherapy. Replace the old with the new. ECP has been so valuable, even life-saving, but it is usually intended to be given for 6 -12 months, not the multiple years Michael has been at it. It’s been effective but tedious. The port access is painful. The hours in the hospital are full days. The treatment itself is exhausting. The nurses in the pheresis unit have become family, the most beautiful gift, but it was pretty cool the last few months for Michael to have a little less time in the hospital receiving ECP. It meant Michael could surf again between treatments, get in the ocean, find a bit more quality of life. Apparently it’s time to pay the piper. With Michael’s GVHD getting more and more active, and the clinical trial opening, we are back to ECP twice a week every week, and in the hospital 3 days a week between ECP, immunotherapy and follow up appointments.  Not exactly full time, but darn close. Again, not to be redundant, but it’s our cha cha. I embrace it lovingly. Healing is not linear. We are alive. Dancing. Grateful. Not out of the woods, but we can look up and see the stars. As usual, I am mixing up my far too many metaphors. Hurdles, dances, boiling pots, and now the woods. Hopefully, you are still with me…..

So, June approaches and here we are. Week #3 of the trial. Michael is feeling good. He’s tired. He has a new rash and a pesky cough that seems to be more annoying than important. We were blessed to celebrate his 24th birthday last week at Sylvester, seeing Dr. Wang, getting labs, in the hospital, with one of his favorite nurses of all time, Jesus. They have ALMOST the same birthday and for the last 3 years we have shared homemade almond flour brownies, creatively wholesome cake, birthday memes and ECP to commemorate these two beautiful May men….  They blew out candles and made a million wishes, or actually, maybe just one, to enjoy this moment. Together. However long it may last…. 

My sweet little children’s book about Michael and the first days of his cancer diagnosis is coming out this summer…. And I am continuing to work on my manual for caregivers, sharing the things I needed, and still need, to hear…. Michael and I have more advocacy days coming up this summer. Maybe going through these unexpected new experiences with insurance, clinical trials, Medicare and Medicaid happened for a reason, making sure our challenges are not for naught. We are determined to continue to use all we have been through to make the world a little better. Maybe it is our purpose, or maybe we are simply finding meaning in what has been dealt to us. Either way, I’ll take it. I am still blown away by Michael and how he has stepped up with so much grace and grit. I am still humbled by you. Your unwavering love and support. Most of all, I am just grateful to be alive, to connect, to love, to dance. With you.

I love you all so much.