Short update

AJ is now 6 days in to the 10 days of radiation, and although the side effects of this process of radiation and steroids is taking a toll on her a bit, she’s hanging in and not giving up. After this it will be back to Mayo (tentatively for the 20th of October) for the full shebang of workup, results and possibly the ‘next step’ , treatment-wise.

 

She has lost a bit more on the motor skills and is very worn out, mostly unable to take care of herself at this point. We’ve been treated to a slew of family members helping with various things, including what we’re affectionately calling ‘supper battle’, where so far Sara, Jenny, Ellis & Joy and Sean & Betty are competing (unbeknownst to them) for best supper ever.

 

For those people wondering, we have adopted a number of things in the Novak household to overcome the issues at hand. So far things are still working pretty smoothly, and although AJ has fallen quite a few times (in new places/ways each time the last one was buggered out) we are going strong.

 

We do thank each and every person for the little things they’re doing, as well as the big things (no matter how small you may see them). We’re in process of finding any more permanent assistance around the house, and just keeping up with things, but it’s all good!

 

Thank you all again!

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 🙂