Honesty and Transparency

When we first decided to create a site for Andrea, we spoke about being very honest to everyone and not sugar coating what is happening. There has been quite a bit of sugar-coating, as things aren’t always roses and honey. We decided to go the route of a site like this primarily because updating what seems like Andrea’s 2000+ relatives and acquaintences couldn’t easily be possible, and because we wanted everyone to know what’s happening as it happens.

That being said, here is the latest from this past week’s visit to Mayo.

Over the last few weeks AJ has been acting strange. One moment she will be herself, then the next she may ‘space out’, repeat a task she was just doing or do something not normally in her day. Some of you may have noticed her on facebook quite a bit more than she has been at any point previously. This has been progressively been getting more frequent. Alongside this we’re noticing some more memory loss and confusion, as well as more prevalent motor control issues.

When we sat down with AJ’s oncologist at Mayo this week, we were brought to be aware of the swelling and pressure in AJ’s head. Looking at side-by-side MRI’s later on, we were able to see that the tumor areas remaining in her head have significantly grown, and this latest chemotherapy treatment appears to have lost it’s effectiveness.

We are not able to get AJ in to any medical trials due to the fact that there are no doctors that would be willing to do surgery in the areas where the turmor now reside, which is a huge part of doing trials regarding internal medicine. At this time we have to wait for the existing chemotherapy to play through her system.

Right now we have a meeting with a brain tumor radiologist on Tuesday that will be working closely with our Mayo team to see if AJ will be at all possible to go through even more radiation. If this is the case, she will start ASAP followed by yet another type of chemotherapy after that. If she is not able to take the radiation, we have an initial plan to continue right away with the next chemo.

This whole turn of events has played a bit of havoc in the Novak household, and also helps explain the recent events.

We have also began the battle with Grand Forks Social Services once again, trying to get any assistance from that place is impossible for us, apparently. We need help, and with their “sliding scale” of what a normal house’ medical expenses are, we apparently don’t qualify. Bitter rant over, just hate getting repeatedly told ‘you don’t qualify’ 🙁

We can’t ask for anyone to do anything, as we’re also in a bit of disbelief, but we’re hoping so very much that we’ll be able to get good news back again. Until the next update, on with daily and weekly fun 🙂