In this update: Treatment plans STILL unknown, Dad visits, Boddy graduation party, vacation photos, vision humor
Sorry it has been so long since my last update. No excuses, especially since I really need your prayers. After I came back from Duke we thought we knew the treatment plan. I went to see my local oncologist and he said he wanted to speak with me about something he thought would be better. He couldn’t get me in for a week. When we finally met he suggested a clinical trial out of Mayo using two drugs that you couldn’t pronounce, even if I could spell them. I asked Duke to weigh in with their opinion and got a call last Friday night from Dr. Reardon saying he thought that was a reasonable way to go. I had already filled out the 14 page “entry” form so it seemed we were set. We left the next day for a graduation party at my brother-in-laws and short vacation to the Wisconsin Dells. Monday I got a call from Dr. Geoffroy’s office telling me that the trial had been closed because of a recent abstract saying the results had not been favorable. They wanted to know if I still wanted to participate. After talking to Mike, who read the abstract, we decided not to. As Mike said, it is positive to have this information beforehand, but what should we do now? Well, I’m still waiting for input from Duke. If I had to guess I’d say we will probably do the Avastin / VP-16 initially recommended by Duke, but I asked them if they had any magic bullets Hey, if you don’t ask, you don’t get, right? One of the other choices was another trial which requires IVs twice a week for two weeks in a row followed by one week off, but pills every day. Unless Duke pushes me that direction my arms just won’t let me go there.
My biggest concern is that I’ve now gone 5 weeks without any kind of treatment. That isn’t good and I can tell. I’m hoping we start doing something this Friday when I meet again with Dr. Geoffroy. Pray something happens soon.
My dad visited me last week and helped me work on some financial plans. We ate some incredible Baked Ziti from our friend Sandy Cross and also got to play a bit of cribbage.
We couldn’t remember a few rules about scoring so I called Wendy. She said, “So I hear you need my help.” See how she is?
Saturday we attended a graduation party for our niece Kayla and nephew Nick. It was also their dad Mike’s birthday (Eileen’s brother.
Sunday we headed to the Wisconsin Dells for a short vacation. Little did we know how short it would be since we must have picked up the flu at the party. Lauren got sick right away and though she felt a bit better yesterday we still decided to head home. Good thing. She was more sick when we got home, Kelly was throwing up all night and now Megan is sick. Pray the rest of us stay healthy and they recover quickly. I just came back from getting a bite to eat and Amy said, “I need to get out of here. This place is infested.” Then she said, “The germs are probably just circulating. That’s not good” Such positive thoughts
There were three indoor and three outdoor water parks, which were all very impressive.The first night we ate at this Moose restaurant and got cool hats.
My vision has gotten even worse so that I have to have someone guide me wherever I walk. After we ate Eileen and the girls walked away. I wanted to follow, but was like a deer in headlights. Eileen looked back at me and I could hear her say, “Girls. You can’t just leave your dad like that!” Reminded me of when we forgot to watch my little sister Julie at Lake Michigan and the tide swept her out. I think my mom said something similar to me and Sue. Now I’m that little kid. “Can you walk faster?” “Please try to keep up”. All you older siblings – give ear
That night we played Indian Poker for Pretzels, but people kept eating their chips
Just climbing the stairs to those rides showed how out of shape I am.
We all enjoyed the last day because the Sun came out. I’m not sure how many people got sick from the glare off my extremely white body, but getting a few rays felt good.
It has been a difficult couple of weeks, but I remain confident in God and His goodness. I know to many that may sound strange or even foolish, but as I told my friend Tamara today, the scales don’t lie and the good side is EXTREMELY weighted down. I was listening to a podcast on the way to Wisconsin the other day and struck by this passage in Isaiah 60, which I’m taking as a promise from the Lord:
1 “Arise, shine, for your light has come,
and the glory of the LORD rises upon you.
2 See, darkness covers the earth
and thick darkness is over the peoples,
but the LORD rises upon you
and his glory appears over you.
3 Nations will come to your light,
and kings to the brightness of your dawn.
4 “Lift up your eyes and look about you:
All assemble and come to you;
your sons come from afar,
and your daughters are carried on the arm.
5 Then you will look and be radiant, (and I’m pretty sure tan too!
your heart will throb and swell with joy;
the wealth on the seas will be brought to you,
to you the riches of the nations will come.
I am expecting a miracle, God’s gonna deliver it, pray BIG!