There are no easy ways to say some things, so bear with me as I explain what’s happened over the last 48 hours.
We made it to Mayo on Wednesday night just fine, AJ spent quite a bit of time counting the falcons and admiring her favorite time of year with the fall leaves changing colors. We had a good night, ordering some really good food and watching a great limited time comedy (see: presidential debate).
In the morning we got ready as usual and headed to Mayo. AJ was nervous, but not more than usual. As we started through our appointments, she became more and more nervous, which showed through expressive seizures. These seizures increased in rate significantly until at the final appointment, AJ had 11 of them before the meeting was even over over the course of 20 minutes.
While there we found out that AJ’s radiation didn’t work as desired, and the tumor has significantly spread and grown, now tendrils of tumor spread throughout remaining healthy tissue throughout her brain. We are no longer talking possible routes to find a stop, but have now changed over to a path of final care through hospice (in home at Joy and Ellis’ home for now). I digress, as we had been interrupted by yet another series of seizures.
This ended with some pretty strong sedative and an ambulance ride to the ER. From there, we made the decision to keep AJ under Mayo’s care overnight under observation (she also had a few medicine changes to get the seizures under control). This involved yet another ambulance ride from the ER to the hospital.
From there we woke on Friday morning with a plan to bring AJ home for quality care. We then spent ~6 hours trying to get in touch with any doctor at Altru to give hospice the AOK that they will oversee hospice’s recommendations. I cannot tell you how North Dakota sucks to deal with in our situation. Not only do they require a primary care physician (which we don’t have, as AJ has successfully been going to Mayo without needing an overseeing doctor saying ‘yup’ every time), but we needed TWO doctors to oversee her care, whereas Minnesota requires one. We spent hours and hours, multiple people calling anyone and everyone at Altru, and ended up not finding a single doctor, let alone two, that would help get AJ home by helping us.
At this point we had an awesome social worker at Mayo, Hospice of RRV, Joy, Erika, Ellis and C.J. all calling anyone and everyone at Altru to get AJ home. We ended up getting a good set of doctors (one from Mayo’s oncology team, uncharacteristic to oversee her care after the fact, and one from HRRV) to approve her transfer… At 6pm Friday.
We got home a few minutes after 1am to a waiting hospital bed ready for AJ.
Our plan from here, whether it be days, weeks, months or years is to be positive and have good, quality and positive time with AJ whilst we are able to.
Thank you everyone for your continued support throughout this. We are still praying for a miracle, there’s always a chance!