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.