Lift Us Up

The last several days have left us with more questions than answers.  While the medical news hasn't been what we anticipated, and doors feel like they are closing, people around us continue to lift us up, and for that we are thankful.

When we left the doctors on March 18, we were crushed by the MRI results but appreciative that research was going to be done to see what options for treatment were possible. We intentionally packed the weekend full of activities and visits so we wouldn't have time to think.  To those of you who sat and talked or gave us a hug, thank you.  You were getting us through our day.

I'm not going to lie, I was exhausted Monday morning and my emotions came spilling out more than once. Thankfully, I work with amazing people who listen and are there to lift me up.  In fact, I left my desk for just a few minutes and a beautiful bouquet of flowers appeared. No note, so I still don't know who to thank.

Tuesday evening Kailey asked me about the 60 minutes video her Dad and I had watched back in December which shared how Duke University is testing a genetically modified polio virus to treat Glioblastoma patients.  (Part 1: https://www.youtube.com/watch?v=bC_HU6qXsmI   Part 2: https://www.youtube.com/watch?v=gtAHNGVY3ec) Rather than just sending her the links, we decided to watch it together.  It is interesting watching something like that when you are living it. I turned to Kevin when it was done and asked, "What do you think?" He didn't hesitate and said, "Let's do it."

I looked up the Duke contact info and sent it to our doctor that night. What I didn't expect is that Kevin would take it upon himself to call Duke the very next day.  That glimmer of hope faded as Dr. Friedman, one of the doctors in the video, called Kevin back to tell him he did not qualify for the study.  Because they inject the virus directly into the tumor, Kevin could not have multiple tumors. Admittedly, Kevin was bummed.  We are so glad that we had made plans with friends for Wednesday wings.  Their concern and laughter were just the trick to lift us up.

As the week progressed, we were becoming anxious because our doctor had not scheduled a meeting yet.  Of course, we all want answers yesterday.

Thursday afternoon, Kailey and I braved the "state of emergency" weather conditions (Wasn't that a joke? If we lived in Florida, maybe.) to get a few groceries.  On the way home we stopped at Kevin's work to let him know we had to be at church in an hour. We walked in on a phone call Kevin was having with a scheduler from Gundersen. She was giving him details of his appointment with Dr. Kwong on Tuesday (today) and his injection of Avastin following the doctor visit.  I cannot even imagine what my faced looked like.  I'm certain my jaw was hanging open.  What was going on?

Poor Kevin was pummeled with questions the second he hung up. What was that all about? Do you realize you are losing a chance for a clinical study if you start that drug? When did this come about? Why aren't we meeting with the doctor first to discuss this? And so on... Kevin was just as overwhelmed.  "I just wanted to meet with the doctor and then she's telling me I'm being scheduled for this drug too." Personally, I still don't know what really transpired on Thursday to set that wheel in motion.

Keaton made his way home Thursday night and the "boys" ventured over to a party at the Schaitel man cave. Details of the night are sketchy but rumor has it a tale or two was told and guts were aching from the excessive laughter.  If laughter is the best medicine, then Kevin should be nearly cured!

The weekend was full of family. Friday, we talked Kevin into taking the day off and took a mini family vaca to Anamosa, Iowa, to tour the National Motorcycle Museum.  So much to see! A museum like this made me think of perspective.  The four of us were all in the same museum but we noticed different things based on our perspective. If Keaton or Kailey or Kevin were to post their pictures they would be totally different. (You may be able to select the picture to see a larger version).

Who knew they actually raced on board tracks?	Lunch anyone?
Kailey was impressed by the sandwich sized saddle bags	Kerosene powered headlight.
The School Bus	Her name was Cookie Crum?

Monday, the kids had gone back and Kevin was at work so I made it my mission to tackle this doctor issue.  I feel guilty that I didn't do it on Friday but I wanted to focus on our time with the kids. Since I wasn't sure who to call to address my concerns, I searched for a possible patient advocate or patient coordinator with no luck.  I ended up leaving a message at the doctor's station reciting my numerous questions.  A short time later a nurse called stating that there were too many questions to be addressed over the phone and we should come in and talk with Dr. Kwong.  Hallelujah!  That's what we had been waiting for all last week.

This post would most likely become a chapter book if I tried to document everything we discussed in our hour long meeting with Dr. Kwong.  Basically, the national clinical trial site they had used to research clinical trials didn't produce any results which Kevin would qualify for.   We felt like we were going to him with "What about this?" instead of him presenting us with options. Dr. Kwong is recommending the Avastin along with a chemo pill called Lomustine (based on a telephone conversation with the doctor from Duke).  There was no sense of assuredness that these drugs will actually prolong Kevin's life.  I have been quite hard on Dr. Kwong and I need to take a step back and realize that a doctor cannot specialize in every area of oncology.  Gundersen is not known for its brain cancer treatment so Dr. Kwong is not an expert in that area.

We left feeling defeated.  We went in seeking answers and felt like we had more questions.  We're not ready to refuse treatment yet and just focus on quality of life.  But what is the right decision?  Do you try a drug that has helped some but created additional health issues in others? At this point, we feel the need to try something. We just don't know what.

Here's what we do know.  We have a call in to Mayo in Rochester.  They are considered a comprehensive cancer center with designated brain tumor programs. The Avastin has been pushed back to Monday to give us more time to gather information.

So here's what is cool.  Kevin went back to work yesterday afternoon (not sure how because I did not feel mentally up to working) and mentioned to one of his co-workers about the disappointing appointment.  Probably 30 minutes after I got home, Kevin was calling.  "Some of the guys from work want to know if they can bring steaks over to grill out tonight. "   There were nine of us enjoying steaks, potatoes, salad, asparagus, pies and beverages.  They thought of everything. EXACTLY what we needed to lift us up.   Buttercup, you're okay. I don't care what your wife says about you. 

Some of you continue to lift us up by sharing Bible verses with us. This one was sent my way today:

Do you not know?

Have you not heard?

The Lord is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak.

Even youths grow tired and weary, 

and young men stumble and fall;

but those who hope in the Lord

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Isaiah 40:28-31

And guess who had another bouquet of flowers waiting on her desk this morning?  Just another anonymous person trying to lift us up. Aren't people amazing?

We are humbled and we are thankful.  We will see this through because of all of you.

Not Giving Up Hope

March 18 was a day on the calendar we had oddly anticipated.  MRI day.  As Kevin said, "I get to see what's going on in that brainbox of mine." It was one of those want to know/not want to know situations.  After all, ignorance can be bliss.

Personally, I was fairly comfortable with the upcoming scan.  I didn't think we would see much at 3 months. It was the next scan I was worried about.  While I was feeling somewhat at peace with the situation, Kevin was not.  He did not sleep much the night before and his "short" demeanor in the morning was proof of his concern.  "I didn't want to get my hopes up," he commented.  As I left him at work I tried to turn him around with, "Don't worry. It's going to be okay."

Our appointment day started with labs at 11:30.  That didn't take long, so we leisurely made our way over to the main hospital/clinic via the Skywalk to imaging. As we walked by landmarks like the healing garden or the historic display windows, it dawned on me that Kevin had not seen any of this. While the kids and I had passed these areas numerous times during that early week in December, Kevin had been in his room or travelled those back-way passages that only patients see.

The "get there early, get in early" plan didn't pan out.  Kevin tried to sneak in a little nap before they finally called him back at 12:35.  I decided to wander around because I was sick of sitting (and there were no puzzles in that waiting room). The MRI was scheduled to take 45 minutes. After 40 minutes of meandering to the cafeteria to see what was on the menu, checking out the auditorium wing, and enjoying the healing garden, I made it back to imaging in case he got done early.  Note to self:  do not look at all of the food magazines on the shelf when you are well past your usual lunch time.

The proposed 45 minutes stretched into two hours.  I overheard one of the ladies say they were having problems with the machine getting clear pictures.  Thankfully Kevin had fallen asleep twice (woke himself up with his own snoring) so he didn't really notice how long things took. Plus he was told they had gotten clear pictures.  You can guess my response when he came out, "Let's go eat!"

We had planned to treat ourselves to Piggy's salad bar since we had been graciously given another gift certificate. As we walked up to the building, we read the hours...Lunch 11:00 to 2:00. We had just missed it.  Oh well, no biggie.  Off to our old standby Culver's for a fish sandwich (also paid for by gift cards).  We continue to be humbled by how giving people have been; it brings tears to my eyes.

A leisurely lunch while watching state basketball on TV, a stop at Wal-Mart for more cough medicine, and attempts (poor cell coverage = dropped calls) to talk to Kailey as she drove home for the start of Spring Break were our way of killing time and trying not to dwell on the upcoming appointment with the doctors.

Checking in to 1st floor brought smiles to our faces and a sense of amazement.  Kevin walked up to one of the check in windows and was greeted by a warm, "Hi! How are you?  What's your birthdate?" We both stood there with our jaws hanging open. "You remembered my name? How do you do that? You have a hundred people (no proof to that number but it feels like a 100) come through here each day." At the same time, one of the other check-in ladies walked over to say "Hi" too.  That is incredible!  Yes, we were there for 30 days in a row but that was nearly a month ago AND for the majority of that time, Kevin did a self check-in by scanning a card.  Being someone who constantly struggles with names, I am beyond impressed. We talked about it again on the way home.

Kevin strategically seated himself closer to the radiation treatment area. Sure enough, one of the radiation nurses walked out to get a patient and spotted Kevin.  "Hi Kevin!  How are you?  How was your trip?"  Yep, she had just made his day.  Thank you, ladies, for being so amazing!

Although our 4:00 appointment was supposed to be with Dr. Kwong and Dr. Conway together, Dr. Kwong came in first.  After his usual line of questioning to gather information, he opened the MRI scans to begin the explanation.  The typical explanation...look at me saying "typical" like we're old pros when this is only Kevin's 3rd MRI (pre-surgery, post-surgery, and today). The typical explanation starts with a review of the previous MRI so we can acquaint ourselves with what it looked like in December.  As Dr. Kwong made his way to the current scans, panic set in.  His halted explanations and attempted reading out loud of the written explanations told us there were two new cancer growth spots.

During this, Dr. Conway had slipped in. At this point, I turned to him, with probably a desperate look on my face, and said, "We're lost." We were not making any sense out of what Dr. Kwong was saying and Kevin was having a hard time hearing his quiet voice.  My plea set Dr. Conway into action.  He moved over to the computer and basically started again.

Kevin has two new cancer growth spots.  One is very small, more toward the front of his brain. The other is below where the old tumor was removed. There is also a possible regrowth in the old tumor area but they could not determine that for sure.  The white area around the old tumor primarily indicates swelling but there was a small portion they were not sure about.  Now what?

A few options have been eliminated.  Because the new tumors are within the radiation treatment area and it didn't destroy them, further radiation is out.  The same goes with the chemotherapy drug Temodar. Surgery does not seem like a viable option either.  The spot in the front is so tiny that it would be hard for a surgeon to find.  The lower spot would be difficult to remove.  Kevin and I both agreed that it would not be worth the risk.  We are so incredibly lucky that Kevin came through the initial surgery with such minimal side effects.  In all likelihood, his quality of life would be dramatically affected if another surgery was attempted.

What's left? They recommended a chemo drug called Bevacizumb (yes, I had to have them spell it for me). This drug, also used for colon cancer, is given intravenously. According to the doctors, it is generally well tolerated. One of the side effects mentioned was a rash.  I had heard of a drug called Avastin and wondered how similar it was to their recommendation.  They said it was they same drug, just a different name for it.  Unfortunately, that statement hit me hard.  For some reason I had remembered our neurosurgeon, Dr. Hughes, talking about the drug.  He said the normal course of treatment is surgery, then combined radiation/chemo. If the cancer reappeared, then they hit you with Avastin. Perhaps my memory isn't accurate, but I'm recalling him describing it as a kill-all, last resort kind of drug which was not fun for the body.  Dr. Conway and Dr. Kwong didn't leave us with that impression so I am still processing, but it leaves my stomach in knots.

Another option is clinical trials.  Kevin nodded immediately that he was open to looking into clinical trials.  I have wondered all along how one goes about locating clinical trials and if I should be doing that research.  Every time I made an attempt, the medical mumble jumble left me confused. Thankfully, the doctors said they (or their team) would begin the research process. They will start by seeing what Kevin would qualify for locally (Rochester, Madison, etc.) and then look beyond.  Quality of life, side effects, and distance from friends and family are huge issues when taking that leap.  At this point, we need to see what is out there.

The current plan is to have Gundersen do research and get back to us early next week.  We don't have an appointment scheduled, but hopefully we can meet by late Tuesday or Wednesday to discuss some options.  Avastin cannot start until a decision is made with the clinical trials.

We are not giving up hope.

Making those phone calls and having those conversations again has been heart wrenching...but we still have so much to be thankful for.

• There are so many loving and caring people in our lives.  We sat in the parking lot outside the hospital for nearly 45 minutes calling loved ones.  Imagine going through this alone.
• We still have options.
• Those fabulous first floor ladies who remember who we are and treat us like a friend. They should be giving classes on customer service.
• Insurance. A bill came this week and Kevin said, "Guess how much radiation is?" Not in the guessing game kind of mood, I refused to guess. "$4,000," he answered. I shrugged. "EACH," he emphasized.  Kevin had 30 treatments.  Process that dollar amount. Insurance covered it ALL. Please, do not let your loved ones go without insurance. Kevin was a never go to the doctor/didn't take any medications guy until December 6.  
• Prayer.  It gives us hope.
• The time we have.  It feels like the window is shrinking but we have today.  

May the God of hope fill you with all joy and peace as you trust in him,
so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13

Let's Go Racin'!

Keaton had the opportunity to spend some quality time with his dad so he graciously volunteered to write this post. I'm wondering if he felt like he was back in school again writing a report.

Going fast and turning left.  Life has certainly been flying by since Dad’s diagnosis in December.  It’s actually been more like the windiest of road courses than the conventional circle track we are all accustomed to. Thankfully we were able to get away and spend time at the racetrack--a place where some of the best memories with dad were created.

Our good friends, the Benson’s, invited Mom and Dad to stay with them in Phoenix and go to the NASCAR race.  Understandably so, Mom was feeling stressed after her travels and, with another day full of appointments on the horizon (Friday), she didn’t feel that it was feasible for her to go. Not wanting Dad to miss out on such an opportunity,  I “volunteered” to fly down with Dad to attend the race and spend some time with the Bensons. Truthfully, I knew it was an opportunity I could not pass up.  It was quite fitting that we spend time with the Bensons at a racetrack, since we had spent countless weekends with them at the go-kart track when Brennan and I were growing up.  So many memories, with many more made over the weekend.

Thursday, March 10
We flew out of Minneapolis leaving a beautiful 50+ degree spring day but smiling knowing we would be landing in a very pleasant Phoenix evening.  Yes, Dad managed to drive himself to the Cities on his own. He is thrilled to be driving again. This trip was the first time Dad or I had flown Southwest airlines, which brought a little confusion and frustration, but we landed safely in Phoenix.  Dave and Lonna met us at the airport (apparently we picked the busiest night of the spring to fly in) but Dave patiently navigated the traffic and took us back to his mother’s condo.  We spent the night telling stories, catching up and reminiscing while preparing for the busy weekend ahead.

Friday, March 11
We left the condo in the morning to pick up Brennan from a much calmer Phoenix airport.  Although Brennan had already made a trip to Phoenix to visit his parents a few weeks ago, we were thrilled he was making the trip again to spend time with us. From the airport, we headed out of the city into the desert towards Maricopa, AZ.  Dave was quite excited to take us to a dwarf car museum, and for good reason.   The museum, which to the naked eye isn’t much more than a shed with junk around it, turned out to be astonishing.  We spent a few hours looking at the completely hand built 11/16 scaled cars and listening to incredible stories from the man behind the creations.  The time and patience he put in to building those cars was amazing.  We then drove back into Scottsdale to check out more cars (what a surprise, right?)  at Roger Penske’s museum and dealerships. We looked at (but were sure not to touch) Lamborghini’s, Porsche, Maserati, Rolls Royce, and other expensive, exotic cars. Before heading back to the condo, we drove around some incredible houses before a quick swim and an excellent Lonna-prepared meal.


Saturday, March 12

Early Saturday morning, Brennan and I set off on our own adventure.  We made an attempt at climbing the Camelback Mountain, which could be seen out the back door of the condo. Although we didn’t make it to the peak, we witnessed some amazing views of the cities and surrounding mountains. 

After our hiking adventure, the "boys" took off for the Xfinity race.  Saturday was a warmup day to see how dad was able to do at the race, in the sun, and out walking around in a large crowd.  One of the instructions Dad and I both got was “make sure you wear sunscreen.”  I saw Dad sneak off a Snapchat to Mom as proof he had applied sunscreen at the track.  Good thing Dad was looking out for both of us to keep us out of trouble. (Mom interjection here...this was the first time Kevin's shiny bald head was being exposed to the warm Phoenix sun so I was worried.  I wasn't along to nag--I mean remind.) Although the race was a runaway win by Kyle Busch, we were all reminded why it is

so fun to be at races in person.  Nothing beats the sound, smell, and feelings you get by being there in person.  Post-race we spent some time checking out the new Chevy vehicles at their display, and opening every door in $300,000+ motorhomes.  Dad was still doing really well after all of those adventures, so on the way back from the track we stopped to pick up Adam Wilcox so we could all see him while we were in town.  I was very thankful to get to spend the evening catching up with Adam.

Sunday, March 13
Boogity Boogity Boogity!  Let’s go racing!  Dad did so well on Saturday, that there was little concern for making it through the bigger race with larger crowds.  We left for the race at 9 am, and made it with very little traffic.  We spent the morning checking out the booths at the racetrack before heading in to our seats.  We had a great view sitting in turn 1, for a great race and an outstanding finish!  It was a blast to watch and listen to our favorite drivers running well and battling it out to the end.  The race itself is a memory that none of us will be forgetting anytime soon.  When we got back from the track dad had to “check in with the bossJ” (or catch up with his lovely wife) so Brennan and I jumped in the pool to cool off from the Arizona heat--rough life.

Monday, March 14
After an awesome weekend with great friends, we had to fly back to Minnesota.  Again, we didn’t have the Southwest thing figured out, but we both made it back safely so we could get back to work on Tuesday. (For those who haven't flown Southwest, they do not have seat assignments.  You just pick a seat once you board.  Because of this, Kevin and Keaton were not able to sit together on either flight.  Crying kids and an extra large seat mate made the flight less than enjoyable).

The weekend went far too fast, but again reminded us we have so much to be thankful for.  We are so grateful for:

• Amazing friends like the Benson’s who provided us with the opportunity to stay with them and go to the NASCAR race.  Thank you does not go nearly far enough for the amazing weekend they gave to us.
• Dad’s health allowing me to spend time with him doing things we love.
• God’s grace for providing us with time together and getting the opportunity to see more of his great creation.