Friday, December 31, 2010
Abigail Birthday Celebration Checklist
Wednesday, December 29, 2010
Life is good
Tuesday, December 28, 2010
How's Dad?
I was watching a couple of little girls play with their Barbie dolls the other day. They had Barbie and Ken in their full wedding garb at the altar reciting their vows. I remember doing that myself as a kid. But I can’t figure out for the life of me where little girls learn those vows. We all know them somehow, “For richer or poorer, in sickness and in health…” But I don’t remember ever saying those words, dolls in hand, and thinking of sickness beyond a cold or maybe a bout with the flu. I just wonder how many people realize the possibilities ahead when they make that commitment.
“How’s Dad?” It’s the question we all hear only second most often to, “How is she?” And it’s the one for which we have no respectable answer. “He’s holding up well.” “He’s in doctor mode.” Those tend to be the best we have to offer. Truth be told, I think he’s holding up well and in doctor mode because of his kids. We may be in our twenties and thirties, but we may as well be two, four, six, and eight again. He’s still our Dad. We’re still his kids. She’s still his wife.
To call the last two weeks – the last 48 hours – a roller coaster, would not only be cliché, but an understatement. The lows are lower than I could ever articulate, and every glimmer of hope lurches us back upward. That goes for every last one of us. I’ve said to a few people over the course of this, I can only imagine two things more difficult than being the child of someone who is going through this right now: being the individual in the hospital bed, and being the spouse of the person in that hospital bed.
Today Mom got through her second round of radiation. And while the markers aren’t huge, we can see moments where she’s starting to rebound from the challenges she’s faced – particularly since Sunday. As they wheeled her out of radiation this afternoon, she held up two fingers. Two down, 28 to go. Tomorrow doctors think she’ll be strong enough to start chemo, too. We have no doubt. She’s never settled for anything less than perfect before, she’ll approach this the same way.
When we were sitting with Mom in her room in the Neuro ICU at Barnes today, I looked at Dad and I wondered if he thinks back to meeting her in a St. Louis hospital all those years ago. Could they have ever even considered that they’d be back in this capacity? I don’t think anyone ever does. But as with so many moments in the last three plus decades, we are where we are. They’re adjusting. We’re all adjusting. But they have an added responsibility as parents – one from which they’ve never shied. They continue to teach by example. Ask any one of us. We understand those vows now. Over the last two weeks our parents have truly taught us what marriage means.
So how’s Dad? I think he’s every bit as scared as the rest of us, but as hopeful as any of us. Two down, 28 to go. One day at a time. Hour by hour. We couldn’t be any prouder of Mom. We couldn’t be any more grateful for both of our parents.
Excited for Mom to ring the bell
Monday, December 27, 2010
First treatment done!
Long day
Sunday, December 26, 2010
Merry Christmas!
Merry Christmas, everyone! Woke up to the traditional smell of Mom’s cinnamon rolls and sausage ring in the oven, but this year Abigail took the lead and breakfast was amazing. Good work sis. As is typical, hours + to make a meal, and gone in 10 minutes max. But who can blame us, Santa had visited and we had presents to open. Movies, clothes, books, cooking tools – not a bad haul for anyone this year. However, the annual tradition of a few scratcher lottery tickets was a complete bust. As Mark said, we made a donation to the local schools today.
Rest of day included grazing on leftovers, naps all around, and apparently a new tradition of watching a Man vs. Food tv marathon for almost the entire day. Most ridiculous show and food eating exhibitions ever. Which led the family to our own Man vs. Food competition, where no one needs to eat, but we of course save the biggest meal for last with a beef tenderloin and gnocchi. Tonight’s blog is all about the food. But that’s just because we all like to sit around and hang out with each other, and after a week we run short of things to talk about. So we watch a man eat a ton of food, as we make jokes while stuffing our own faces. We all had a great Christmas.
Tomorrow, the family will have to take a short break from being with each other as Mark and Maggie need to head back to Cincinnati for the week, and everyone else is heading to St. Louis. Mom starts her treatment on Monday, so as much fun as Christmas was, today doesn’t hold a candle to the excitement we all have to get Mom her ultimate Christmas present.
Goodnight and Merry Christmas!
Saturday, December 25, 2010
It's a Wonderful Life
Happy Christmas Eve to everyone. Wuellner house was full of holiday cheer, wrapping presents and prepping food for Christmas Day. Big thanks to Aunt Kate for helping us continue a Wuellner tradition by cooking the Christmas Eve clam chowder (complete with meatless for Maggie and clam-less for Abigail). Mom is doing great, where she went to bed first before any of us – obviously excited to get to sleep early so Santa and Christmas will arrive that much sooner. But she did stick around as we had an impromptu family watch of It’s a Wonderful Life – “no man is a failure who has friends (and family).”
Goodnight and Merry Christmas.
Friday, December 24, 2010
So happy together
Thursday, December 23, 2010
Luke is home, bring on Christmas!
Early morning took the Mark, Maggie, Mom, Dad, and me to St. Louis – two-fold reason of visiting the docs and meeting up with Luke, Abigail, and even more family. First stop, picked up Luke at Aunt Amy’s – welcome back brother. Also, thank you to Aunt Amy and Uncle Tom for the delicious lunch of pizza, soup, stoup (combination of soup and stew), and many desserts. Next stop, took a look at a really nice house in Brentwood – time will tell if Abigail makes an offer on it. Last but certainly not least, Mom saw some docs and got her annoying staples taken out – Mom can now wash her hair on her own, but more importantly, we know our Mom is in the best hands possible with the detailed treatment plans that were set for next Monday morning.
Most importantly, we brought Luke back home with us (Abigail has to work one more day, but we get her soon enough as well), and the only immediate plans we have are to celebrate my birthday and Christmas in the next 3 days as a whole family. Welcome back brother, see you tomorrow sis, good luck to everyone with their last minute shopping (yes, the sibs all went to Wal-Mart, my 3rd trip in as many days), and have a great day/night.
PS, Mom just came down the stairs, couldn’t sleep. She responds, because your Dad is snoring. (Sorry Dad, now the world wide web knows). Since it’s past midnight, Mom wishes me happy birthday. Then follows it immediately with, “I’d rather be giving birth right now.” Love you, Mom.
Wednesday, December 22, 2010
Sleepless in Sedalia
Today Mom and I had a nice mother-son morning and afternoon. We got some fresh air while running errands, including a trip to the bank and the hair salon for a wash before our trip to see the doc tomorrow and remove the now-unnecessary staples. Mark and Maggie came back from their overnight business trip to scenic Omaha (sounded like a successful one!), we all ate dinner together as a family, and eventually made our way to bed over the next few hours.
Lately, it feels like someone is always awake in the family, no matter the time of day. Abigail had a break of dawn commute back to St. Louis on Monday, Mark and his co-pilot Maggie have gone everywhere from Cincy to Omaha, Luke has traveled nearly cross-country from San Diego, Dad works early to get home early, and Mom has been spotted roaming the house at all hours of the night. All of our minds have been going a mile a minute, thinking about each other when at home, and thinking about how soon we can get home when we are away.
But tomorrow I know we’re all excited to get up to St. Louis, where Abigail lives and works and Luke has been waiting since his flight landed today, to see the entire family together for the first time in a very long week and a half. Mom is excited to get to St. Louis, but still not letting that cloud her planning “Mom” mode. She constantly reminds Mark and Dad to drive the speed limit, and tonight told us to make sure we packed tooth brushes – just in case we ended up sleeping in the Mr. Fuel parking lot again. Love you Mom.
Goodnight everyone.
Monday, December 20, 2010
The In-Laws
Adam requested that Mark write a blog entry tonight but I knew right away it was not likely to happen for multiple reasons. (A). Mark is challenged when it comes to social media and (B) We are hiding out in a hotel in Omaha, Nebraksa tonight because Mark has a work meeting at 9am here with 3 more hours of prep for the meeting and it is already 10 pm. So, sorry Adam but you’ll have to hear from Mark’s other (and I think better) half…me.
I have never seen the movie “The In-Laws” but I had to title my post this way because everyone who knows the Wuellners must know they are the exact opposite of the stereotype and in this case the movie. When Mark and I started dating 10 years ago (“off and on” enter mark’s voice here), I was clueless on how far Mark and I would get in our relationship but I knew upon meeting his family that he had one of the kindest, most welcoming and talented families that I had ever met. And after only 1.5 yr of calling myself a Wuellner, I feel as if I have been a part of the family forever and I truly am so fortunate!
We did receive good news today that her radiation will start on Monday, 12/27 at St. Louis Barnes. As mentioned in previous postings, Luke arrives to St. Louis tomorrow and everyone will be back in Sedalia on Wednesday night after the meeting with the oncologist on Wed afternoon. We are continuously overwhelmed but the countless snacks, meals, visits and goodwill from neighbors and friends.
Sunday, December 19, 2010
The Waiting Game
Our parents raised four kids who cannot stand the sidelines. Though they haven’t an athlete among us, we all want to get in the game. We all want to fix it ourselves. We all want to win. Which is what makes this week such a challenge. We can make dinner. We can help pay bills. We can do laundry. But not a one of us can do what we really want to do: fix this.
So we’re acclimating to a new normal. We sit still for a change. We watch movies and the clock. We count down the hours until the next doctor’s appointment and until Luke gets home.
Anyone who knows our family knows mealtimes are a big thing around here. Mom is an amazing cook, and most gatherings wind up in the kitchen. And that’s where we landed for a few hours tonight. Finally, Mom caught a break: Maggie and I made dinner and, no, Mom couldn’t stay away. She supervised – checked the chicken to make sure I wouldn’t wind up giving everyone food poisoning (so far, so good!). I forgot how good it feels to get in the kitchen – to be in control of something.
Mark and Maggie got home late last night, and it’s so good to have them here. I have to head back to St. Louis (very early) tomorrow morning and get back to work. Mark has a business meeting in Omaha, so he and Maggie will drive there tomorrow and back on Tuesday. We’re all jealous of Adam, who gets to hang here throughout. We dread backing out of the driveway, but look forward to Tuesday. Luke will be home, and Mom goes back to Barnes for an appointment on Wednesday. So we all don’t go very long without seeing each other.
Today was much like every other day; nothing monumental to report, and that’s just fine. Though, today is Adam’s fiancee’s birthday (Happy Birthday, Carrie!). She wasn’t here to celebrate, but she did it up right in New York, where she went wedding dress shopping. She sent pictures of the top contenders. Don’t worry, we sent Adam out of the room while Mom, Maggie, and I oooh-ed and ahhh-ed.
For Mom (and all of us), every day has its challenging moments, but most days are better than the one before. Every day is one day closer to the start of treatment.
The last two nights, I’ve managed to click on the TV to find Miracle on 34th Street at the exact same point, when Doris Walker says to her daughter, “Faith is believing even when common sense tells you not to.” As we count down these last few days before Christmas, we keep that in mind. We trust in the doctors that this waiting game is okay, that it will pay off in the treatment. We rely on one another and believe in Mom, that she’s strong enough to put up a fight. And, even when it’s difficult, we have faith that God is with us through all of this. After all, this week of all weeks, we don’t have to look far for reassurance that miracles do happen—and over those, we have no control.
Saturday, December 18, 2010
Mom got her hair did!
Today was full of rest and relaxation, including a trip to the hair salon. Abigail and Mom enjoyed breakfast in bed this morning, as Dad went into the office and I slept in a bit. Next, happy to report that for the first time since the biopsy in St. Louis, Mom was given the green light to go to the salon and now has a very clean head of hair – and a stylish trim to boot. She looks great if we do say so ourselves, and she will be the first to attest that she feels a million times better too to have it done.
Rest of the day, we spent hanging around the house taking care of a few things, doing a small amount of Christmas shopping online, and just hanging out. We rounded out the late afternoon with a solid nap, followed by dinner and a movie – instant holiday classic “The Holiday” (as Mom said, probably the last movie Jack Black was any good in). A good movie, glass of wine, and a cup of Rocky Road ice cream later, everyone was fat and happy. Not a bad way to spend a day. Someone remarked that sometimes the days seem to run together, but that’s just because each on has been just as good as the one before and after it. Looking forward to Mark and Maggie walking through the door any minute, and then bring on Sunday! Hope everyone is having a great weekend so far. Goodnight.
Laughter is the best medicine
Short and sweet, today was another great day. Mom and I had coffee and Cheerios in bed, watching Today show and chatting for most of the morning. In the afternoon, she and Dad took a trip to the bank, getting out of the house and some well-needed fresh air. And best of all, a few friends visited, funny stories were told, Abigail arrived from St. Louis, and yes we watched another episode of Modern Family as a family (starting to see a trend) – what all of this means is that I can safely say there was more laughter than tears in the house today, and that is a really big deal that makes me smile just to type it out. Thanks again to everyone for reading, praying, and thinking of us. Happy to say that in addition to Abigail, we get Mark tomorrow, and Luke in just a couple more days. Have a great night and God bless.
Thursday, December 16, 2010
Icy roads turned a 3 hour drive into 15, but Mom made it home!
The last day (and this week for that matter) were absolutely surreal. The good news was that Mom was discharged around 6 pm on Wednesday. Bad news, it was raining and the roads were getting icy. Highway I-70 was the worst any of us had ever seen it on what should have been only the usual 3 hour drive from St. Louis to our home in Sedalia. And that's saying something, for those that don't know, this is the same highway that Mom made two roundtrips on every weekend when we 3 boys were in high school at St. Louis - she drove 12 hours most weekends for the 10 years that at least one of us was attending. Ask Mom about those trips, and she'd never comment on the hours of driving, but just how happy she was to see us and talk to us about our week at school and life in general. Those are some of my favorite trips and talks too, thanks again Mom.
Back to our story. Well, instead of that usual 3 hour trip to get home, it took us 5 hours just to drive maybe 5o miles from St. Louis, the majority of that at a standstill. We ended up reserving a hotel in Warrenton and attempted back roads to get there, only to be stopped by highway patrol who had apparently closed both the Interstate and the state highways. From where we had been sitting on the interstate, there was a literal 20 mile parking lot of cars ahead of us. Final result, it was midnight, and Mom, Dad, and me crammed into our Toyota Highlander, sleeping in the parking lot of the Mr. Fuel gas station (or Chez Fuel as Mom referred to it), waiting for daylight. We made 2 failed attempts during the night to see if traffic was moving, and finally, 6 AM (now 12 hours since leaving the hospital), we awoke and got onto the highway that was moving along fairly nicely at 50 mph or so. We’ll take it! – arrived in Sedalia by 9 AM, all things considered, not too bad. Dad, you are amazing, both for being so patient and so vigilant throughout the night, and for all those hours driving in those terrible road and weather conditions. Thanks for getting Mom and me home safe.
Today in Sedalia was really a great day with Mom and Dad. Mom had her coffee, we watched some television (including Modern Family – Dad couldn’t’ stop laughing when Phil gagged on the smell of paint), and we stayed connected to the siblings and many other family and friends. iPads, phones, and computers were up and running most of the day. We had delicious pita and chicken for lunch, followed later by Mom’s favorite Calgaro’s pizza for dinner. All of us got the chance to shower, sneak a nap in if possible, talk to one another in the comfort of our home, and just be together. It was really nice and I am very grateful for today. Tomorrow, we are all looking forward to Abigail coming home. Followed by Mark and Luke in the days shortly thereafter. Everyone travel safe, and please feel free to comment and write on this message board. We are very lucky to have such amazing, supportive friends and family in our lives. Goodnight.
Wednesday, December 15, 2010
homeward bound!
Abigail's email about the first 24 hours, and treatment moving forward
Dear All,
These last 24 hours have been indescribably difficult. They performed an angiogram yesterday to map the tumor, after which her doctor informed us in no uncertain terms that this tumor is inoperable. His suspicions regarding exactly what's going on were confirmed in a biopsy today. In medical terms, she has a high-grade glioma in the thalamus region of her brain. In layman's terms, it's a very angry and cancerous tumor that grows quickly and is tough to reach.
So onto the next step: how to go about treating it. The radiation and oncology teams met with us this evening, and they plan to approach this using both techniques. Likely the day after Christmas, she will begin receiving radiation therapy. As I understand it, the reason for the delay is to create a type of treatment that will specifically target the lesion, and leave the healthy part of the brain alone. They will make a model of her brain tomorrow, and will spend the days between now and December 27 designing the treatment. It will continue five days a week for approximately six weeks. She will simultaneously receive an oral chemotherapy pill designed to work in tandem with the radiation. They expect she will respond well initially. The greater concern is long-term. Just to be clear: no one has offered a prognosis. We are taking this not only day by day, but hour by hour right now. Every individual responds differently to treatment, and we go forward praying she responds better than anyone could dare to hope.
The entire staff at Barnes Jewish has been outstanding throughout this ordeal. From the ER physicians, to the neurosurgery team to the radiation/oncology representatives we met late today, she's in a good place. Confidence does not in any way diminish fear. We have all had our moments, and that certainly includes Mom. Given the surgery, today was particularly difficult for her -- and I'm not sure she's yet realized she has a buzz cut on one side of her head... I consistently read about the power of positive thinking, and as we move forward, we're determined to make sure she not only has every possible opportunity at the best therapies, but is surrounded by people who love her and believe in her ability to beat this. I realize it's ridiculous to look at this situation and wonder why. We do so anyway. But we see medical miracles every day. I see no reason why she can't be one of those.
Thank you so much for all of your texts, e-mails and phone calls. I have not been able to respond to each individually, but know I have received with gratitude every single one. Dad is handling everything well. Mark and Maggie have been here since yesterday, and will stay until tomorrow.
I'm aware and thankful that many are forwarding these updates to others whose e-mail addresses I don't have. Despite the circumstances, every member of my family is aware of how fortunate we are to be surrounded by so many amazing people. I know I don't need to ask again, but please keep praying. Thank you for all of your offers to help, and we have no modicum of pride in this matter. If we need something, we'll ask.
With Gratitude and Love,
Abby