Friday, June 26, 2015

Packets of Spiritual Sunlight

I am long overdue to post something here.  I don't know everyone that reads or follows this blog but I do know many of you.  I am sorry that I have been slow in keeping you updated.  Your prayers and faith in my behalf have been a great gift to me.  I love and appreciate you.

Well, we fly out for Houston on Monday.  Treatment will begin Tuesday and we will need to remain in the Houston area for about 3 weeks while they make sure that I don't have any adverse reactions to the treatment.  We hate to be away from our children again but it is necessary.

For the longest time there was still a shadow of uncertainty about if they would allow us into the study or not.  They seemed more inclined to allow us but wouldn't give us a solid answer.  Finally I just had to pipe up and tell them.  "Look, we don't want to whine, but we need some guidance here.  Please let us know if we are going to be in the study or not."   The lead investigator emailed back and said that he really needed to talk through the situation on the phone with me.  We finally got together on Father's day and had a good talk.

It seems I am only the second person that this treatment has been attempted on.   The first was a child and I am the first adult.  They had expected that our insurance would pick up the bill for the chemotherapy and hospital stay that are involved in the study but our insurance was unwilling.  The insurance saw that it was an "Investigational study" and said that our contract specifically permits them to deny payment for such treatments.  The principle investigator, Dr Stephen Gottschalk, said that fighting with insurance companies was something he wasn't used to doing.  His emphasis has always been on research.  He had filed an appeal but didn't know how it would result.  He was very concerned that we would end up having to pay something to be in the study.  I told him that money wasn't our primary concern.  Our concern is to find a cure.  Then he told me "It might be even $3000 or more."  I almost started to laugh.  All this drama over that much money?  I think that he has no idea how much money we have already spent in this fight.   I told him that God had been very good to me in my profession and that we would have no problem finding the money to pay whatever was needed.  He then said, "Then in that case lets get going.  I will have the business office call you tomorrow to set up the start date."  He said he had reviewed my health status and felt that there was nothing there to prevent my participation.  What a lovely father's day present that was.  We have spent a lot of time fretting and worrying about what we would do if we were not allowed to continue in the study.

This has been a rocky road to travel.  It hasn't been easy but at the same time I pondered about what has happened to me and my family these last four years as we have faced these problems together and learned to lean upon the Lord for our support.  I can honestly say that these last four years have been transformative for me personally and for my family.  I am a better person because of what I have been through.  My family is a better family.  Even JoLynne and I, who have always had the sweetest relationship, have grown so much closer because of this.  We walk every day.  I wish you could listen in on our talks during those late night walks.  Wow, we have some amazing discussions as we talk about how God is hearing and answering our prayers and how he is using the priesthood to bless and preserve me.  Cancer is awful, but God somehow makes good things come out of bad ones.

We are still waiting for God to show us the great miracle that He has prepared.  I still need to be cured.  I know that I should be nervous.  The cancer has progressed enough now that there is no time for us to make a mistake in our choices.  We are poised at the brink of a great miracle or, frankly a certain death.  I should be terrified but I'm not at all.  There is a peace that has settled over both JoLynne and I.  Somehow fear has vanished.  It feels like God is illuminating the path before us with small beacons of light that seem to repel our fears.  Richard G. Scott, one of the few apostles that I ever met in my life and had a chance to spend time with said it this way.
"The Lord didn’t just deliver the faithful from their trials right away. Rather, He visited them with the assurance that He would deliver them in His own time. These assurances, to borrow the words of ElderRichard G. Scott of the Quorum of the Twelve Apostles, are like “packets of spiritual sunlight” that Heavenly Father places in our path “to brighten [our] way.”1Sometimes that assurance is all we need to persevere through trials, knowing that there will be an ultimate deliverance."
We know that there are challenges yet ahead but we also know that with God's help we can meet them bravely and that all will be as it is supposed to be.  What a great gift to know, beyond faith, that God is there.  He is my loving Heavenly Father.  He hears my prayers and cares about me personally. When I am afraid, He takes my hand. When I hurt, He feels my pain and helps me to bear it.  I am in awe that the greatest being in the universe cares about me.  I think that in the big picture I am not much at all but somehow God thinks I am worth His time.

Wednesday, June 10, 2015

A few more bumps in the road...

Well, I haven't posted an update here for some time.  Frankly, there have been some issues that we couldn't tell how they would resolve so I have held off,
hoping that I would do an update when the path became a little more clear.

I think I have mentioned before that starting about 4 days post surgery I started having trouble with my right eye.  I was losing motor control.  About 10 days post surgery the vision clarity in that eye began to decline.  Both control and clarity continued to get worse every day for the next few weeks.  When we came back to Utah I went to my ophthalmologist.  He wasn't really sure how to explain my problems.  My brother in law, Troy, helped me to get into see a nuero-opthamologist in Salt Lake.  We had an extensive visit there and they had me get a new MRI.  After going over everything it was the doctors opinion that the problems were caused by tumor growing behind my eye pressing on the optic nerve and the nerves that control the muscles.  When I communicated with my doctors in Houston they became concerned by where the tumor was located and said that I might not qualify to be in their study anymore because swelling in the tumor when treated may cause significant problems.  Wow, that was a bad day!  We felt like we had been spiritually guided to Houston to be in this study and now I was being disqualified.  Honestly we didn't know where to turn.  So, as we usually do, we went to the temple.  Both JoLynne and I had distinct impressions that God was in charge and that it would be okay.  I remember standing in the shower and saying my prayers, (I know, weird) but I was praying that God would give us direction so we would know what to do and where to go.  I had a distinct impression, "Eric, when you come to fork in the road, you will have the guidance you need.  You are not at a fork in the road."  Still, being all too human we worried.

A few days later my vision suddenly began to clear.  My motor control was still impaired but I could see again.  In a matter of about 3 days my vision returned almost completely.  Prior to that I was essentially blind in the right eye.  I could tell black from white and that was about it.  I called my brother in law Troy (neuro-opthamologist in Maryland).  He thought that there might be more going on than what was thought, maybe an infection.  Tumors just don't grow backwards without intervention.  I told the doctors in Houston about the changes.  They didn't want to commit either way without talking to the neuro-opthamogist.  Last Sunday, my whole family held a fast for me.  We are so grateful for their faith.  Monday morning my phone rang.  It was the doctor from Houston, Dr. Wang.  She said that they had been talking all week about my case and they finally came to the conclusion that there was no way that all my problems could have come only from tumor since the problem was reversing.  In their words "We have decided that you should be back in the study if you still want to be.  Can you start treatment on June 23rd?"  Wow there were tears of joy at our house when I hung up from that phone call.

We fly out to Houston this Monday for a new MRI and to meet with their neuro-opthamolgist.   He just happens to be a close friend of Troy's, who was instrumental in helping us get an appointment again.  Assuming that everything is okay with him and the new image we will begin treatment again in Houston on June 23rd.