Memorial Service

The memorial service for AJ will be Friday, November 4th at 11:00am at Our Saviour’s Lutheran Church in East Grand Forks, MN.

 

There will be a visitation starting at 10:00am with a luncheon provided afterwards by the Forest River Community Hutterites.

 

 

Andrea Joy Novak

Andrea Joy Novak

3/22/1984 – 10/30/2016

 

Today is the day that the suffering and pain has ended for Andrea Joy Novak. She’s lived a short yet fulfilling life, seeing many of her dreams come true.

 

 

 

We are processing all of the events and arranging the inevitable services to follow, so bear with us as we make plans and we will let everyone know what events are to follow. For now Andrea is at rest and no longer laboring along to stick with us, she is peaceful. The last pretty fall leaf has apparently fallen.

 

Thank you everyone.

my favorites

My favorite colors are purple and blue

My favorite foods are potatoes, beef stew, croissants, creamy clam chowder, pumpkin pie, i love barbeque ribs and pulled pork, peanut butter and banana sandwiches, banana cream pie, banana nut muffins, cranberry orange muffins, rhubarb crisp, deviled eggs (aunt amandas are awesome), applebees maple butter blondie, thin mint and samoa girl scout cookies, hot turkey sandwich, cheesecake strawberry or turtle, smores, club sandwichs (not with real turkey which tends to be dry but with deli meat), french toast, mexican omlets, banana bread,rootbeer float, pumpkin pie, and pretty much any mexican food especially burritos (grandmas are the best) and tamales

My favorite candys are caramello, tootsie rolls, skittles, peanut m&ms, turtles,andes mints,fireballs(in elementary school they would give you either gum or a fireball for reading and i always chose the fireball), and snickers

My favorite things include animals, nature, movies, music, video games, tv, comedians, arts and crafts, cars, puzzles, plays/musicals, and photography

My favorite animals are lemurs, horses, cats, snow leopards, fenec foxes, otters, butterflies, and tigers

My favorite video games include mario bros(pretty much any of the old school games), f zero, mario kart, bloodrayne, street fighter, mortal kombat, toejam and earl, echo the dolphin, halo, call of duty, zoo tycoon, peggle,bioshock, sonic the hedgehog, legend of spyro series, zuma, portal,tomb raider,little big planet,frogger, battletoads, earthworm jim, donkey kong country, zelda, tetris, pacman,boom boom rocket, minecraft, far cry, gran turismo, fallout, borderlands, dead space, gears of war, minesweeper, oregon trail, banjo and kazooi, dantes inferno, mega man, super smash brothers brawl,mario party, metal gear solid,devil may cry, lost planet, and kinectimals

My favorite music includes panic at the disco, linkin park, breaking benjamin, taking back sunday, thursday, brand new, nine inch nails, bullet for my valentine, white stripes\jack white, beyonce, jay z, nicki minaj, missy elliot, kelis, aaliyah, tlc, chevelle, alicia keys, ciarra, ludacris, foo fighters, fall out boy, jennifer lopez, rhianna, shakira,avenged sevenhold, eminem,the doors, ac/dc, pink floyd,christina aguilera, queen, five finger death punch, pink, adelle,usher, lonely island, jewel, modest mouse, chevelle, thousand foot crutch, the used, and oasis (there are so many other bands that I love but there are just too many to list but as you get older daddy will give you girls a bit of a musical education πŸ˜‰ )

Movies I really love include the fox and the hound, who framed roger rabbit, drop dead fred, summer school,stay tuned, maximum overdrive, the man from snowy river, what about bob, wild hearts can’t be broken, spirit stallion of the cimeron, benji the hunted, kung fu panda, beauty and the beast, little mermaid, so i married an axe murderer, austinpowers, black stallion (1979 version), heidi (1993 tv version),romeo+juliet, harry and the hendersons, beethoven, planet of the apes the old ones and new ones, the cutting edge, pleasantville, bill and teds excellant adventure, black beauty (1994), homeward bound, the land before time, all dogs go to heaven, ever after, herbie the love bug the old ones, the princess bride, my cousin vinny, far and away, sweet home alabama, taladega nights the ballad of ricky bobby, dr. doolittle (the old one),petes dragon, robin hood men in tights,legends of the fall, a river runs through it, legally blonde, office space, space balls, short circuit, batteries not included, the wedding singer, coming to america, trading places, beverly hills cop, terminator, napoleon dynamite, the neverending story, little shop of horrors, the great outdoors, desperado, edge of tommorow, easy a, enchanted, blues brothers, nationallampoons christmas/european /vegas vacation, the rescuers down under, the money pit, emperors new groove, the jerk, three amigos, fried green tomatoes, edward scissorhands, secret garden (1993), howard the duck, hunger games, 50 first dates, waterboy, billy madison, coneheads, happy gilmore, airheads, joe dirt, black sheep, tommy boy, police academy, big, anastasia, back to the future, ferngully, mighty joe young, armed and dangerous, the green mile, shawshank redemption, cast away, forrest gump, ducktales the movie treasure of the lost lamp, a league of their own, turner and hooch, dragnet, pretty woman, fly away home, dumb and dumber, the haunting (1999), misery, miss congeniality, the horse whisperer, the brave little toaster, petes dragon, shaun of the dead,ferris buelers day off, she devil, death becomes her,milo and otis, paul blart mall cop, stardust, the big lebowski, the chipmunk adventure, my fair lady, balto, iron will, call of the wild, stand by me, the harry potter series, the matrix, dogma,matilda, the other women, the heat, interview with a vampire, taken, i am legend, idiocracy, indiana jones series,tremors,an american tail feival goes west, a little princess (1995), white men can’t jump, days of thunder, top gun, cocktail,sounder, where the red fern grows, three amigos, city slickers,drowning mona,how to lose a guy in 10 days, 10 things i hate about you,hope floats, a walk to remember, american phsycho,walk the line, boondock saints,donnie darko, cruel intentions, the truman show,lawnmower man, groundhog day, scrooged, saving silverman, men in black,twins, and kindergarten cop (some of these movies aren’t appropriate for you both now but once you get a little older, plus there are so many other movies that you should see but again there are just too many to list)

My favorite season is fall because even though you get warm sunny days still its cool at night and its not humid like during the summer

I love during the fall when it rains and during the winter when there is a snow storm its so nice and cozy and warm to stay inside. The smell of fall is also awesome its just so crisp and the smell of sugar beats and the harvest is so nice, and the colors of the leaves are so cool.

My favorite tv shows are family guy, south park, american dad, king of the hill, conan, peewees playhouse, tales from the crypt, cutthroat kitchen, the great food truck race, fast and loud, top gear the british version, restaurant stakeout, diners drive ins and dives, seinfeld, friends, simpsons, million dollar listing LA, flipping vegas, arrested development, its always sunny in philadelphia, the critic, saturday night live the older seasons were the best, in living color, full house, roseanne, the soup, duck dynasty, deadliest catch, bearing sea gold, ancient aliens, under cover boss, garfield, reno 911, 3rd rock from the sun, futurama, ducktales, talespin, chip and dale rescue rangers, animaniacs, inspector gadget, the world of david the gnome, classic looney toones, muppet babies, pound puppies, my little ponies, care bears, the joy of painting with bob ross, fraggle rock, fred penners place,gummy bears,teanage mutant ninja turtles, xmen, dragon ball z,drunk history, mr. rogers, lassie, rin tintin, animal cops, steve irwin crocodile hunter, and the graham norton show(some of these are old shows that I watched as a kid and then others are ones i enjoyed as i grew up)

My favorite comedians are russel peters, john mullaly, dane cook, jim gafigan, gabriel iglesias, kevin hart, bo burnham, patton oswalt, amy schumer, pete holmes, nick swardson, daniel tosh, kumail nanjiani, john caparulo, bill engvalle, mitch fatell, zach galifinakis, john oliver, andy samburg, aziz ansari, bill burr, jeff foxworthy, anthony jeselnik, jo koy, kathleen madigan, john pinette, sarah silverman, chris titus, stephen lynch, ricky gervais, and jimmy carr

My favorite model of car is ford and of course i love mustangs

My favorite ice cream is mint chocolate chip, butter pecan with carmel on top, blue bunny banana split,chocolate marshmallow malt from dairy queen (i remember dad always ordered it and i tried it and really liked it), white chocolatemousse with gummy bears on top, banana split with chocolate strawberry & butterscotch or caramel toppings ,and rocky road

I wanted to travel everywhere and explore the world but never really got the chance, but I did get to go to some amazing places like the grand canyon and niagara falls
I always wanted to move to Duluth MN because it is so beautiful there

I love chai tea lattes and turtle mochas from caribou coffee

I love fruity smells usually: from bath and body works i like cucumber melon, cherry blossom, cool citrus basil, coconut lime breeze, amber blush, black raspberry vanilla, juniper breeze. from victoria secret i like love spell and true escape. Also i really like the smell of lilac bushes and lavender

Favorite stones include jade, tigers eye, geodes. i have always loved rocks even the normal ones most people would think are boring and it helps if they look unique πŸ˜‰

Favorite dog breeds are corgis, huskies, irish wolfhounds, and border collies

I have always loved ancient history documentaries , nature documentaries, and shows like how its made or unwrapped

When i first saw machu pichu in a book in middle school i immediately wanted to go there it is so amazing

I love during summer either in the early morning or as the sun is going down the sound of mourning doves, as a kid i always slept with my window open so those were the sounds that i really like also the sound of trains in the distance

thrice send me an angel
owl city- good time
afi leaving song pt 2
nirvana- breed

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).