about me

When I was growing up during the summer I rode bike almost everywhere, Eric taught me how to ride bike but I was so afraid to ride on the sidewalk because I thought I would fall, but then when I tried to ride on the street it just clicked and I was riding immediately. Darrin and I would play bike tag where we chased eachother around the neighborhood on our bikes, and a friend of Darrins had a bike racing track in his backyard. Darrin and I would go to the river city speedway almost every Friday to see the races, then we would go to the pits to meet the drivers, my favorite driver was Sunny Mack and Darrins was Todd Mack. We would come home just covered in dirt but it was alot of fun.

We spent alot of time at Sandy and Dannys house, and Betty and Glenns house because they both lived in Grand Forks, I have a lot of great memories of hanging out and playing with my cousins, cousin Paul would play video games and Sara would play dress up and barbies with me. We got to play with the computer in Bettys basement, and Glenn has a Model A car that we would sit in and honk the horn. They would come over to our house sometimes and in the basement we would play hockey using pillows from the couch as goals and a ball that we would hit back and forth it was so much fun.

We also would travel to Grygla from time to time and visit grandma Mabel and grandpa Karls house, where we would get fed amazing home cooked meals and grandma would have cookies ready for all of us grandkids, and grandpa would make huge pancakes each morning. We had corn cob eating contests, and would play at the tennis court nearby and the park that was right in the backyard. While we were there sometimes we would go to grandpas cabin and he had a garden, and he had a water pump with a cup hanging where we would pump well water and it tasted like pennies but it was really cold. The drive to Grygla was always kind of exciting we would wait until we got to the 6 mile mark where we would turn to drive into town, and there our grandpa would always say because of the curve in the road the water tower would jump from one side of the road to the other. We would go to Julie and Steves house where they have a farm thats just outside of Grygla, they have cats and dogs outside that they would feed (I actually tried to tame one of the wild cats once it didn’t work very well). When we were there we got to ride snowmobiles, we rode in their combines, and would play in the trees next to their house with our cousins Adam, Greg, and Keith.

My grandpa would show me his bird book with an owl on the front of it, which I now have and it was always fun to look through. Grandpa always told me that grackles, which is a type of bird, are the meanest birds and that polar bear liver is poisonous. At their house when it was cold we would all fight for a spot in front of the heat vent where there was a leather seat that would get super hot. They always had bird feeders in front of their windows and I remember yellow/black birds all over the place, and hummingbirds would sometimes come and eat. Grandma Mabel was always so nice and loving but was also very funny, she would shake her fist at Grandpa Karl and call him a stupinagle when he did silly things. She was could also be very stern and strong but was very faithful when it came to her beliefs. My grandpa was a really warm, funny guy with a lot of great stories to tell who loved to play horseshoes.

Every year we would go to Grygla for the fall festival where we had oofda tacos, tractor pulls, a parade, and frog jumping contests (we all took this very seriously and would search for frogs by our grandparents house, looking under the mats of the horseshoe throwing course worked best) It is a ton of fun if you go and grandmas house which is now where Sandy and Danny live is right where the parade route used to be, and dads (your grandpa) car used to be in the parade.

I was always going around the neighborhood visiting the dogs, at the green house on the corner there used to be a collie, the blue house on the opposite corner had a big white dog, and there was a house accross the alley on the opposite side of the street that had two dachsunds that I would visit. I have always loved animals and nature, when the birch tree (one of my favorite kinds of trees next to cherry blossoms and sequoias) in our backyard was struck by lightening I cried, and I saved a peice of it in a cooler for about a week.

On holidays like Thanksgiving and Christmas we would all get together as one big family but when our homes got too small we had to rent the community center in Grygla, at Christmas there was a ton of awesome food and we played a game where the kids would draw names and buy eachother presents, and the grown ups would all sit in a circle having bought a girl/guy gift and they would pick one, then they would have a chance to “steal” other peoples open gifts but we haven’t done that since my grandparents passed away. But now we have the big family Christmas at Julie and Steves, and Thanksgiving has been at Eric and Amandas the past few years.

Eric and I haven’t always gotten along mostly because of the age difference, and because I was always telling on him and I would scratch him (I was pretending to be a cat, and was a bratty little sister). He and Darrin also liked to torture me by giving me purple hearts, and snake bites. I did get into theater and speech because of him, because I always looked up to him, and it turned out to be really awesome. And as we have gotten older I have realized he is a pretty amazing brother.

Darrin and I fought a lot when we were younger too, but were much closer in age so it was much more of a love hate relationship. We used to drive the people at united daycare crazy together, mom always said we were fine when we were apart, but when we were together we fed off of eachother, and we were eachothers best audience. We became best friends because we shared so many of the same interests like cars, music, food, tv, games, and movies. We would sit in his bed for hours either watching tv, or I would watch him play metal gear solid or gran turismo, and we would have deep conversations about just about everything (we really liked watching ancient aliens about how ancient cultures all were building pretty similar and advanced structures, even though they had little to no contact with eachother and they used techniques that were advanced even by todays standards, our theory was that aliens had to have helped) we also joked around a lot. We used to watch sprint car racing, and rally racing together, and he would tell me about all of the cars. I was absolutely devastated when he passed away in August of 2010 but then I found out a few months later that I was pregnant with Eleanor, and that really kept me busy and not depressed. Then a few years later we were really excited to learn of being pregnant with baby Gloria.

I had many nicknames from my brothers andrettia fart, fart sack, oliveoil because I was really skinny like the character from popeye, and bones (which is a nickname given by my dad). Darrin also said I had eyes that are black like shark eyes.

Once Eric convinced me to go out onto the deck and punch Darrin in the face when I was maybe 8, then when I did Darrin came running after me, I ran inside and Eric was waiting for Darrin to punch him again. Sibling rivalry is kind of fun sometimes.

Another time Darrin, and I and a couple of his friends were driving home in his 64 galaxy and it was really icy, he decided to whip circles in the middle of the intersection, as we were spinning we could see the flashing lights of a police car. Needless to say Darrin got a ticket from the nice officer.

My mom and I are very close, we used to argue a lot when I was a teenager but its because we are so alike, but I can talk to her about anything, she is so loving, funny, and nice just like my grandma. We love watching reality tv together and having discussions about them, especially house hunters and love it or list it. We also really enjoy shopping, and going to craft shows together. She is also an awesome cook, her burritos and meatballs are awesome, and the carmel chocolate brownies she makes are like heaven.

I remember when my mom came to my friend heathers house because it was dark out, I was supposed to come home before it got dark, but we were playing flashlight tag and so I got in trouble. She was driving the cyclone if I remember correctly.

My dad has always worked on cars since I can remember, he can often be found out at the shop, but now he also has a big garage in the backyard to work closer to home. He can be very quiet and laid back, but is also very funny, stubborn (I picked up the stubbornness, and being laid back from him) and when needed though he is very protective of his family and is more sensitive than he lets on.

Once when we were at back to the 50’s Darrin got an eye infection from the hot tub at our hotel. My mom, Darrin, and I took him to the hospital, by the time we were driving back to the hotel it was dark and mom was driving but doesn’t see very well in the dark so Darrin was helping to see the lines on the road, this was before we all had cell phones so dad was so worried and was calling frantically to find us at the fairgrounds and at my aunt sandies house.

My parents have always been there to support me, and have worked hard to give me everything I could want. I am so grateful to have such amazing parents.

I used to hear about my dad going to back to the 50s, and then as we got a little older my parents would bring us there. There are tons of awesome cars, amazing food like cheeseburgers with fried onions, sweet marthas cookies baked fresh and served with cold milk, raspberry/pinneaple soft serve, and cheesecurds. They also had a swap meet and some crafts, its pretty awesome. On the drive home there would always be bad weather, one time it rained so hard the whole time and it took six hours to get home because we had to pull off the road and wait, another time there was large hail being reported so we hid the cars in a car wash, the scariest time was when we couldn’t see anything as we were driving Darrin and I were in his 64 galaxy hard top, and mom and dad were in their 64 galaxy convertible. Darrin and I couldn’t get the windows to not fog up so we were moving to the left side of the road I told Darrin to move to the right side of the road, just then a semi zoomed past, we managed to pull over to the right side of the road where the parents already were, dad got out so that he could drive Darrins car and just as we were all getting in lightening struck in the ditch next to us.
When we were kids my brothers and I were outside all of the time just running wild in the neighborhood, we would spray eachother through the kitchen window with the sprayer thing, and lock eachother out of the house. Then when one of us was locked out we would usually just break in through the kitchen window. I was always really afraid of thunderstorms but Darrin would encourage them saying “is that the best you can do”. I left my window open almost all of the time even in the winter, which is probably why I was sick so often.During fall we would play football in the front lawn (if it was darrin and i on a team against eric we would try to tackle him by grabbing his legs, but sometimes i would be on erics team and darrin would be on his own, then eric would give me the ball and just block darrin), then during winter we would sometimes if the snow was high enough jump off the back deck into the snow.

We frequently had family get togethers at old mill state park where we would swim in the lake and we would have a picnic with a lot of food. My aunts, uncles, and grandparents would usually be there it was tons of fun.

We also went to italian moon darrin and i would usually get salad bar for the awesome chicken noodle soup and creamy clam chowder, i really like salad with sunflower seeds and hard boiled egg on it and sometimes grapes. We sometimes got pizza and that was really good too, i haven’t been there in a long time though so i don’t know if its as good. Eric worked at italian moon for a while also.

I have always been strong willed and have a mind of my own, in elementary school one time they asked me to go get paper and when i came back with a different kind i just said that i liked the one i picked more. My mom also said one time i kicked my grandma because i thought she had killed a turkey, so clearly i am an animal lover.

In school my favorite class was always art, biology, and geography (i liked knowing the different countries and their capitols mostly).I got in trouble for talking too much in class which mom says i come by honestly because our whole family is pretty chatty.But in school i did get into speech and theater, i always was super nervous about public speaking so speech sort of helped and my category was dramatic duo so we would practice our speech and then travel to different schools to compete and perform our speeches.(it was fun to travel around and perform, then the great part was getting to spend time with friends and the possibility of winning a medal)

During the flood of 1997 we were sandbagging during school and then they said they were closing the bridge to the point because it was close to being covered with water and that was the only way on or off the point. It was kind of scary because the sirens were going off, there were army halicopters landing in oleary park, and in the field down the street from where the parents live there were earth movers working desperately to get enough dirt for dikes. We had enough time to save most things from our basement because we knew ahead of time since it wasn’t a flash flood, and we were going to stay to make sure the basement didn’t flood but as the water started slowly creeping up the street we decided it was better to just go. The decision was made a little bit difficult because at that point we had two choices one was that they could drive us in a big military vehicle over the flooded bridge and they weren’t sure if the bridge was still structuraly sound or we could be airlifted out. We chose the airlifting option (one of our neighbors who took the bridge later told us that it was a very terrifying because the bridge was completely covered and they could feel the water pushing the huge truck and it seemed to take forever). Since we took a military helicopter we figured our cat snowball would have a heart attack and since we didn’t have a cat carrier we figured it would be best to leave her in the house since we knew the upstairs would stay dry and we left food and water. We stayed at my grandparents house in grygla until the water started going down and we went to school for a little while there. I was just so worried about snowball and we did have firefighters check on her they didn’t see her of course because she was terrified of strangers but they noticed her food was being eaten. When we were finally able to get back home there had been about 6 feet of water in the basement and our cat was so terrified even we couldn’t get her to come out, we ended up having to take apart the bathroom closet in the basement which is where she was hiding and when we were carrying her out she was just howling and crying.

In middle school we went to wolf ridge on a school trip which was amazing because we got to go for nature hikes(it rained the whole time we were hiking so i got sick of course but that was ok), canoeing, we got to see real wolves, and do biology tests on the algae in the lake water. I took a bunch of pictures but most of them were ruined by water, thankfully eric was kind enough to give me some of his wolf ridge pictures.We also went to a big open pit mine which was pretty cool and on the way home one of the buses got a flat tire so we had to wait a really long time for a replacement bus.
I got into theater in high school, I never really minded that i got small parts because it gave me more time to socialize backstage with my friends, and i still got to pick out costumes and get my hair and makeup done. There was a girl that i went to school with that looked just like me and one time we were on stage with practically the same hair and dress and darrin who was recording the show realized halfway through that he was recording the wrong person. During the process of practicing for the performance we were all assigned a f.u.b. or fire up buddy that would give little gifts until the night of the performance when you would find out who they were and they would usually give you a bunch of gift.

Kia and Alicia were my best friends in high school we were always together (kias sister lani was my dramatic duo speech partner and her older sister shaina has always been a sweetheart) We grew apart over the years but have tried to keep in touch despite having crazy busy lives. I remember going to alicias house where her dad bread sled dogs and we had bonfires and the occasional cast party after a theater performance. When i went to kias moms house i loved seeing her dogs and cats and hearing her mom tell stories about when she was a kid, then we would go to her dads house who always had cool antiques because he bought and sold that kind of thing an there were two cute little miniature pinchers that he had.

We took some family trips too: We went to montana which was beautiful we got to see mountains, camp, and see old faithful. I got to ride horses when we stayed in a motel next to the mountains, there was also a tram that took us to the top of the mountain i was so scared but once got to the top it was so worth it because the view was amazing. We also went to aunt stellas, she was a very sweet lady but her house was a little creepy at night especially. I remember wlking through a pasture trying to avoid cow pies and we went to a ghost town where there was a dark hole in the ground that must have been a well at some point but it was very scary because we didn’t want to fall in.

We also went to Florida where we swam in the ocean (it was so nice and warm but swallowing salt water or getting it in your nose is really not fun and it hurts, Darrin said while he was swimming he thought he felt the tale of something touch his foot which really creeped us all out), went to disney world (it was awesome there was so much to do and see, and eric was giving me crap because everytime i saw a duck i wanted to take a picture of it) , and kennedy space center. It was amazing and we even visited relatives there who had a pool in their backyard which i swam in until it got dark outside, then on the drive back we stopped in washington dc and stopped in knoxville at the car museum.

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™‚