another step in our journey.

So yesterday we began another step on our journey fighting this cancer.

For many reasons, we need to shrink the size of this tumor.  For one, it's not good having it press upon my brain so much.  Also, for us to continue in Houston, the tumor needs to be reduced in size.

My doctors in Houston, Dr. Gottschalk and Dr. Wang, have been so kind to us.  They are such caring kind people.  I am grateful to both of them.  They are scientists, of course, but they are also really kind health care providers.  In such a challenging time in my life I am so grateful for their kindness to me.

In our discussion they had mentioned to me the possibility of maybe adding a drug called PD1 to my treatment.  It is interesting that, independently, this had also been suggested to me by my oncologist here, my brother-in-law, a super smart physician back east, and of course it is all of the sudden very much in the news since President Jimmy Carter is being given this drug.

PD1 is a drug that helps your body's immune system to find a cancer and attack it.  Many cancers have developed the ability to hide from our own immune system.  PD1 takes away the cancer's ability to hide.  This is a very new drug but is already showing great promise.

So yesterday I had my first dose.  We asked our insurance to pay but they said no.  The drug is not yet approved for osteosarcoma, only for melanoma.  There is a nationwide study beginning this week actually, testing the drug against osteosarcoma but the study isn't done yet.  Because the insurance denied payment we asked for mercy from the drug company.  In the past they have been willing to give the drug for free sometimes when insurance says no.  We haven't been able to get them to agree to that yet but we are still trying.  We felt strongly that this was the course that God wanted us to take so we told our doctor that we would just pay for it ourselves if it would hurry things along.  It isn't cheap, $8000 per dose but my children tell me that I am worth it.  JoLynne seems to think so too.  So, yesterday it began.

I seemed to have a very quick response.  I know that I have cancer in my right sinus and around my eye and brain of course.  Within an hour of the infusion I began having significant swelling in all of those areas.  The swelling around my brain gave be a really bad headache.  We came home from the doctor and I was so grateful to have all of my sons, minus Spencer, and my son in law, gather around me and give me a priesthood blessing.  Within 30 minutes of that blessing my pain was nearly gone.  I am so grateful for the power of God shared with men by means of the priesthood.  That power is very real to me.

As I was preparing to get the PD1 I was saying a prayer of course, asking God to please bless this treatment to be effective in fighting my cancer.  I had the most distinct impression come over my mind.  It basically said, "Eric, open your scriptures to the story of Moses and the red sea.  The words that you will find there are my answer to your prayer.  So I opened my scriptures to Genesis 14:13-14 and here is what it said.

 13 ¶And Moses said unto the people, Fear ye not, stand still, and see the salvation of the Lord, which he will shew to you to day: for the Egyptians whom ye have seen to day, ye shall see them again no more for ever.

 14 The Lord shall fight for you, and ye shall hold your peace.

What a sweet and wonderful answer this was for me at this time.  I am so grateful that God would direct me to those words.

Last night, when the pain had finally gone down, we were all sitting around in our living room.  All of our family.  We were talking about fun memories.  JoLynne and I have been blessed to  travel much in our lives together.  We have been all over the world doing humanitarian work but we have also traveled much, just the two of us, just for the joy of being together.  My head is just full of happy memories that we have together.  Last night I found myself thinking, "Eric, there is still room in your head for more happy memories and you are going to get better and make those memories together with your sweetheart JoLynne and others."  Not only was I thinking that, I found myself really believing it.  It was such a wonderful feeling of hope.  I was so grateful for how I felt.

So grateful for God's blessing to me.  I have been so so blessed.  I am so grateful.

Blessed with a wonderful wife.

Okay, I just want to go on the record here.  I don't want to brag but I may have the best wife a man could ever ask for.  JoLynne is simply amazing.  I am SO SO grateful for her.

Yesterday was a difficult day.  We finally got hold of the researchers from Houston to talk about our MRI results.  Dr. Gottschalk is the principle researcher there and we talked to him on the phone.  It was his feeling that the MRI showed progression of the cancer.  By the written protocol associated with his experiment his hands are tied.  So essentially we cannot at this time go forward with the HER2 trial.  He is a kind man but he is bound by how the experiment was written.

This is such an emotional let down for me.  When they told me in Houston that my blood result was the best that they had ever seen I was so hopeful that we had finally found the miracle that we have searched so hard for.  Now with this MRI it seems that door is closing for us.  It breaks my heart.

My son Seth is so wise.  He is visiting right now from Boston.  When we picked him up from the airport he told me.  "Dad, we are going to find the way.  I truly believe that.  I believe that if God doesn't want you to go through a certain door that He will close that door to you.  At that point or soon thereafter he will open another door that He wants you to go through."  I have worried so much that I wouldn't be smart enough or in tune with the spirit enough and that I might miss the next door when it presents, I wouldn't see it for what it was.  I told Seth what I was worried about.  My sweet Seth just looked at me and said, "Dad you are plenty smart and I have no doubts about you being in tune or worthy.  Look dad, if God has gone to the trouble of preparing a path for you to escape it would make no sense for Him to hide it from you.  You will know that path what it presents."  I have leaned on those words from Seth.

Okay, with all that said, the door to HER2 seems closed at least for now.  I asked the doctor if he can hang onto those cells in case we need them in the future.  He told me that of course he would.  That he would keep them for at least 4 years.  I then asked him what he thought I should do.  He told me "Eric, there is a new drug on the market called PD1.  It is showing great promise.  I really think you should consider trying that.  It isn't approved for your disease, only melanoma right now, but maybe your oncologist there could get an exception made for you to use it in osteosarcoma."  It is so interesting to me that my own oncologist had mentioned the exact same thing to me just two days earlier and had in fact already started the paperwork to seek approval.  Also, Dr. Wang, another researcher from Houston had mentioned it also about a month ago.  And finally, my brother in law from back east who is a super smart physician had mentioned something to that effect as well.  It seems like another door is opening.

PD1 is what Jimmy Carter is on right now.  Cancer cells have the ability to hide from the body's natural immune system.  It is almost like a cloaking device for your Star Trek fans or in more general terms it is like Stealth technology.  The idea behind PD1 is that it turns off the ability of the cancer cells to hide and therefore let's the bodies immune system find the cancer cells.

A few months ago, Shanelle found an article about using oxygen to help the immune system better find cancer.  The research is early but it is coming out of Boston.  Another way that cancer hides is by depleting oxygen around the tumor.  Cancer is able to live in pretty low oxygen conditions but the bodies T-cells need lots of oxygen.  Essentially the body's T cells find the cancer and when they get close to it they kind of fall asleep because there isn't enough oxygen.  So, they don't do their job right.  The initial research was done on mice.  The mice were intentionally given breast cancer.  Some were then put in a chamber with 60 % oxygen and the rest were just left normal.  Basically the ones in the chamber got better with no drugs, the others didn't.  They have not yet done the tests on humans.  Two days ago when JoLynne was saying her prayers she felt like God wanted us to reconsider this research on oxygen.  I called my dear friend and physician Steve Berry and he gladly hooked me up to have an oxygen mask in hopes that it might help.  I have long ago learned to never ignore my wife's impressions.  So now I am on oxygen.  Perhaps this is another door opening.  Here is a link to the article.

http://www.nbcnews.com/health/health-news/could-oxygen-make-cancer-therapy-work-better-n317446

Yesterday night I was exhausted.  With all the talk with doctors in Houston I was feeling the strain.  JoLyyne and I love to walk together.  As we walked JoLynne stopped me and said. "Eric, look up.  Look at how beautiful the clouds are."  They were beautiful.  Then she said, "Eric, we are going through some hard times right now.  I think our motto needs to be "Look up"  Boy I love that woman.

Last night I was having a hard time sleeping.  I think it was the steroids combined with the new oxygen mask I am wearing.  Anyway, I got up at about 1:00 am and just couldn't go back to sleep.  I even walked around the cul de sac for a while barefoot in my pajamas.  I just couldn't get my mind to settle down.  Finally about 3:00 am sweet JoLynne, tells me 'Eric, lay down and I will rub your feet until you fall asleep."  She proceeded to do that and I was finally able to fall asleep.  She is just amazing.  I love her so much.