Mid week update – Oct 26

As we sit and hold AJ as she shakes and has seizures, it pains us to see her in so much – everything. It’s very hard to explain what we’re going through, between the very tough thoughts of just wanting it over and the prayers everyone’s offering begging for a miracle.

AJ has been running VERY hot the last 24+ hours as well as expressing whole body seizures and mostly unable to talk. You can see she is physically worn out. To combat the anxiety and nervousness, we’ve increased the sedative to assist with the seizure and anxiety relief four-fold, as well as increasing the doses given in a day. We’re all very shaken up by what is happening in front of our eyes, as AJ simply doesn’t deserve what she’s being forced to endure.

We all knew this would be very tough, and for those helping out it certainly is that and much more.

There is this hive-mind of support that surrounds the Austin household this week, and we cannot thank everyone enough. If it seems like we’re ungrateful or unresponsive to conversation, it’s because we are very mentally and physically worn out from the progression of the last 4 days. AJ is very much still with us, and we’re trying to be positive, but it so very hard right now.

Throughout all of this we truly know there is support and plenty of hugs to be had – for now, back to these little girls who don’t have the full picture right now and need someone to build blocks with.

We will continue to update everyone every couple of days so you have an idea of what’s happening.

And because it wouldn’t be a Novak update without some comedy: Sean’s cheeseburger soup is still taking the lead πŸ™‚ (Thank you everyone for saving us from the daunting task of making dinners – we’re certainly spoiled as all get out by you all!)

Thank you everyone…

There are always miracles

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!

Short Update Part Deux

Here’s another quick update.

 

We have the upcoming trip to Mayo on the 20th of this month where we will find out where we stand. The current status of AJ is not as bright as we would like it to be, but here’s what we’re seeing:

 

AJ has virtually no independent motor skills, and is extremely quiet as her speech has been limited to simple few word phrases on a good day, and most of the time quiet one word answers or repetitions of words you say around her. She does good with assisted walking on a good day, but the new normal is having a hard time sitting upright, and needing a wheelchair to move around. There is a decent amount of hair loss from the newest radiation treatment, as expected, but there is aΒ side effect from the steroid medicine of super amazingly easy brusing anywhere. We’re talking anything pressure (like leaning on a counter or jeans bunching up behind the legs when sitting – it happens with toddlers aged 2-5 for sure as well, with their little pointy knees and elbows). It’s super bad looking and to be honest, as her husband I feel like crap when I see all of it when there’s nothing I can do to stop it or help fix it, but we’ve been told a few times from the wonderful staff at Altru’s cancer center that this can be a very normal effect of steroid use in this situation.

 

On a good note, the benefit held previously as well as all the help since is paying off in the form of a few very helpful assistant devices like a ‘transfer bench’ for the shower (seriously, sit down and slide on over the edge of the tub, then sit and shower!). Our bathroom has transformed in to a handle-city, with handles available wherever you move around πŸ™‚

 

We would really like to thank everyone for all the awesome and amazing tasting meals, and although we’ve been spoiled by some great tasting food, there will be quite a bit of work trying to beat the super amazing Cheeseburger Soup made by Sean (sorry if misspelled, horrible with names).

 

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’ πŸ™

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 πŸ™‚

Not a boring drive this time

We went to Mayo this past Thursday for a bi-weekly infusion, and on the way back, one way or another, we ended up running the front end of our only vehicle in to the back end of a semi trailer, most likely totaling out the vehicle we just dumped quite a bit of money in to and leaving us in lovely Fergus Falls overnight.

 

We are currently (hopefully) getting a replacement somehow, and will hopefully be ready to roll (pun intended) for this next week’s full-shebang results trip.

 

On a side note: kindergarten already for oldest child – man oh man time is flying!!!

THE Trip has happened, and it was great!

Here’s the ‘too long, didn’t read’ for those who want to get the rundown quickly: The trip happened without issue, everyone had a great time and everything we wanted to do was done in excess!

Now for the (still slightly TL;DR) details…

We flew out of Fargo’s Hector Airport successfully, dragging a stroller, 2 car seats, 2 carry on’s and two diaper bags with relative ease. We would advise anyone thinking about parking at Hector longer-term to re-think, as their “$48 max. per week” is quite bull, and ends up costing $2 PER HALF HOUR after that “$48 max.”

Day One:
We landed at LAX in Los Angeles and after waiting for our crazy rental-car-shuttle driver, we headed to San Diego in what they call a ‘full size SUV’ (Ford Escape) – then went to our hotel just north of San Diego.

Day Two:
San Diego Zoo! It was amazing – WAYYYYYYY bigger than anyone thought and we ended up ignoring every ‘timed’ attraction to get lost for 3 hours around some parakeets. We had such a fun time here, and it was everything Andrea hoped and expected + more. Here are a couple of pictures. SUPER long day, but temperatures stayed low and we stayed hydrated.



Day Three:
We took a break from the 13,000+ steps our pedometers logged to head to the ocean! La Jolla is a crazy place with tons of ‘normal’ Ferrari, Lamborghini, Maserati and Tesla’s, so we were kind of shocked to be seen in our Ford, but it was nice sliding in to tiny parking spots. We spent quite some time on the beach, digging for sea shells and overall just had a wonderful time (after realizing that you go to the beach WITH your bathing suits on, as there is NO place to change there)

Day Four:
San Diego Zoo Safari Park! For those unaware, San Diego Zoo had so many animals that they created a second park just for the desert-type larger animals. This place is a bit smaller than the Zoo, but they make up for it with actual Safari rides IN TO ENCLOSURES to feed giraffes and other animals. Friendly heads up – small children (under 12) can’t go on these, but there is a whole area just for them, which is a great make-up! We had TONS of fun, and after getting back to the hotel, we realized that Under Armor ‘no sweat’ clothing is NOT sun-proof, and you WILL burn through it (learn from us, PLEASE).







Day Five:
We ended up having a whole day to burn (no pun intended) and swung by Sea World for a few hours. We had a good time seeing some very large animals not anywhere else. The park is much smaller than the San Diego Zoo’s, and VERY confusing to attempt to navigate, but we had a great time overall.



Day Six:
Ahh, this day we packed out of our San Diego hotel and headed up to the ‘City of Angels’ – where you’ll need all the angels help to prevent you from FLIPPING YOUR LID in 4 hour traffic πŸ™‚ When we finally made it there, Andrea learned a hard lesson on how spoiled we are with restrooms available in every store we go in to, and an even harder lesson on what an actual in-city gas station bathroom *really* looks like. We spent quite some time on the Hollywood Walk of Fame, and saw about 1/2 of it during out hour on the footpaths.



Day Seven:
Ahh, the fun day of surprises πŸ™‚ We started the day by heading to the La Brea Tar Pit(s?). This giant hole in the middle of L.A. is a bubbling pit of tar (and water now) that they are still excavating mammoth and other pre-historic bones from. While there, we noticed a food truck roll up – then three more – then after a few minutes, there was honestly more than 20 food trucks, some from the Food Network’s show, and we ended up grabbing something from one of them, knocking off another ‘must do’ from the ongoing list. Then we headed to lunch, where AJ found out where we were going for the afternoon, and what so many people worked to make happen: AJ not only got to see a Conan show, but she and her family got to sit with the stars on the show that night in the exclusive ‘green room’ and meet the man himself, Conan. This all happened thank you to a bunch of persistence, Reddit and two very amazing ladies (Lisa and Sona) at the Conan Production studio.






Day Eight:
We had to wake up at FOUR in the morning to make it to crazy-shuttle-bus-driver pickup today, and ended up getting super lucky at LAX by the TSA fast-tracking our family past a quite-long backed up line. Pro Tip: mail your laundry, carry on’s and souvenir’s back home – this helped TONS with less to worry about, VERY handy. We then had a bunch of trouble on the actual plane, getting moved to the back and separated a bit, but the flight ended safely in Fargo, where we found that if we leave *everything* on in our vehicle, the battery will be nice and dead when we get back. Thank you again Mr. Jojo for taking the time to super-man his way over to jump start us with his cute little chick BMW. We made it home and were VERY glad to sleep in our own beds…

Day Ten:
Just kidding, we weren’t done yet – with a day of at-home-laundry-cleanup out of the way, we again headed to Mayo in Rochester for another infusion! πŸ™‚

Thank you to everyone who has helped and all the positive thoughts during the planning and execution of this, it’s been a long time coming, but it’s finally done. We still have many Zoo’s on the list, and in about 10 more days we will have another ‘results’ visit to Mayo, so look for another update shortly!

Goodbye for now, and take care all!

Great News!

After spending the last 8 weeks going back and forth every other week from Grand Forks to Rochester for infusions of this newest medicine, and worring up a storm all the while proceeding through all the daily tasks and both girls birthday party, we are fresh back from Mayo yet again with news.

It turns out the visit on 07/14 brought some much needed better news!!!! The areas of new growth we saw last time, as well as the lingering areas around the original resected area of tumor appear to be missing on the latest MRI. This doesn’t mean completely gone, what it means is that the infusions appear to be working to the extent of there being no visibility on the scans, and all other vitals are normal.

There was a slight issue with fast heartbeat and high blood pressure, but anyone in our place should understand how AJ may be a bit stressed out. (*we will add a last-month-to-this-month comparison MRI photo as soon as we are able to, the new MRI isn’t available to us quite yet)

This is so much better news than we were expecting (with the luck we’ve had so far) and we will be heading to San Diego this next week very much in good spirits.

Speaking of ‘THE Trip’ – we have a full week away this next week, making AJ’s dream come true by finally making it to the San Diego Zoo. We are all excited (but not even nearly as much as AJ is!) to make this happen and have a week of nothing to worry about.

Thank you again to everyone for the positive thoughts and prayers!

We will update with lots of pictures soon, take care everyone.

Well, here is stuff!

Okay, so we got a call from Mayo a couple days ago saying we’ve got appointments upcoming in a few days. Although unusual to only have a few days’ notice, we got there just as well.

We found that the right lobe growth wasn’t as much of a concern, but the bridge between the hemispheres has grown. The analogy of a ’16 lane highway with 2 lanes now shut down’ was used, which is a good way to explain it.

The decision to stop the less than really effective chemotherapy was made, and a change to a blood inhibitor is in place. This new medicine effectively prevents the cancer cells from reaching out and getting their necessary blood supply. This is a change in treatment, and will require travelling to Mayo every 2 weeks for the duration of the infusions.

 

 

New Infusion Mayo June 2016

 

There are still other options as we go, there is no loss of fight left in AJ! ?

Until next time, take care everyone! πŸ™‚

May update

There is really no ‘status change’ to report, round 1 of this cycle of chemotherapy is in the books, and round 2 is about to begin. We don’t quite know when the next Mayo visit will be, but we will update when it gets close!

As far as the ‘dream trip’ aka The Trip, we have a date! And we have seats reserved on the planes, hotels and a vehicle booked as well as tickets for the main attractions we’ll be seeing. We didn’t want to go the route of any of these ‘dream’ foundations, as there is always someone more in need and to be honest, after being turned down so many times for whatever reasons, we decided from here on we’ll do it on our own πŸ™‚

For now, don’t forget to stop and smell the flowers whenever you can!

-The Novaks