Lots of updates happening very quickly. First off, all thanks to the doctors of the Mayo Clinic who continue to show absolute focus, empathy, creativity and speed in their treatment of Anya. It is amazing to witness.

A couple weeks ago, Anya's limp returned, along with increasing cognitive issues, and other symptoms. As the limp rapidly progressed, both her neurologist and hematologist-oncologist were amazing, calling after hours on consecutive evenings Monday and Tuesday to talk through options, including the possibility of hospitalization. But Anya was already scheduled for comprehensive scans Wednesday and Thursday of this week, so they stuck with that timing

Anya had three-part spine MRI and full-body PET scan on Wednesday and a brain MRI today. We fully expected to see progression, and all the monitoring showed that, with the most growth in her lumbar spine. 

So, there was a conundrum. Her main cancer doctor had an oral medication he was hoping to piggy-back on top of her targeted drug, but knew that it would likely take weeks/months to build up to have a therapeutic effect. And her limp and other issues were progressing rapidly. They considered another round of intra-arterial chemo to her spine in an effort to halt progression quickly, but her blood work still hadn't recovered from the last round of that more than two months ago. (Her final two chemos — April and May — were cancelled for that reason.)

Instead, they had another idea, to direct radiation therapy to the specific worst spots where cancer is growing in her lumbar spine — and through what I call the magic of Mayo, Anya literally got a same-day appointment for the radiation simulation needed to begin 10 days of radiation to her spine, which will start tomorrow and continue every day, including weekends. (This is not the first time Anya has gotten a same-day appointment at Mayo!) Her cancer doc is working in the background to make all this happen on a timetable that is basically unimaginable. 

The hope is that this will halt progression of the weakness in her legs in the short term before she loses the capacity to safely walk. We also found out that her cancer doc received FDA approval for a clinical trial that would target the CSF1R mutation that appears to be the driving force in her Erdheim Chester disease. Although the trial has been approved, it does take a couple months to get the details arranged and to open it to patients.

So, Jeff and Anya will stay down in Rochester another day, with Anya starting radiation Friday. We are still scrambling a bit to figure out whether she'll be driven back back and forth each day, or stay over sometimes. Being at home more will be better than a hotel, especially with some of her other side effects. It's 5:15 pm, and she and Jeff are still meeting with the cancer doc, after the radiation simulation, which followed the brain MRI and blood tests. 

OK, while I was writing this, we just found out they are still planning to add one more the intra-arterial melphalen (chemo) to her lower spine, too. (Her bloodwork finally bounced back.) But they likely can not do any more after that, to avoid permanent damage to her bone marrow.

So Anya will be on her targeted cancer drug, get 10 days of radiation, and one more dose of intra-arterial chemo targeted to her spine. With the idea that this slows progression enough for there to be time to get on a new clinical trial or to add the other oral drug and allow it time to build up. 

In completely different and happy news, Anya has a new boyfriend, Miguel. He's very sweet and supportive and they are great together. He's going to come to the cottage with us next month. Anya's mood is good!