faith in every footstep

I borrow my title from a comment made here by a dear friend.  It feels like such a good way to describe how we are trying to face my battle with cancer.

Wednesday I had sinus surgery.  The tumor tissue in my nose was so swollen that I could't breath through my nose on either side.  It was getting annoying.  I had a visit with an ENT and he said that it could be corrected without too much risk.  I checked with my doctors in Houston and they were fine with removing the tissue as long as we would preserve it and mail it to Houston for analysis.  So, with all that said, I went ahead and scheduled.

The surgery was scheduled for 6:00 am on Wednesday morning at a new hospital out near Thanksgiving point.  Tuesday night a nurse called up to get information before my surgery.  She wanted a short history of my condition that had lead to the need for the surgery.  I think she may have gotten more than she bargained for.  I told her briefly about my battle with cancer and also about some of the miracles along the way that have preserved my life.  I also told her about the current experimental therapy we were undergoing.  I told her that we felt like it was a miracle prepared by God to preserve me.  After a few minutes of that she finally said,

"Wow, that is the most amazing story I think I have ever heard.  You sure aren't shy about talking about God and stuff.  You are kind of a different sort of person"

That made me laugh.  I told her that I fully believed that my life would be spared and that I don't plan on keeping it a secret that God had a hand in my preservation.  I told here "

"Pretty much anybody who will lend me their ears for 5 minutes is going to hear a little about God's hand in my life." 

She laughed again and said,

"I wasn't scheduled early tomorrow for work but I think I will come in anyway.  I would really like to meet you in person."

Anyway, so we showed up Wednesday morning.  The hospital was very nice and the nurse I had talked to the night before was there to meet me.  She had gotten up at 3:00 am and driven from Moroni.  Everything went really well.  I woke up able to breath again.  They cleaned out my nasal passages and my sinuses as well, at least partially.  It was so nice to breath again.  I expected some pain from the surgery but was pleasantly surprised to find that my overall pain was actually less than before.  It must be because they cleaned out the sinus and removed some of that pressure.  The tissue had been saved and JoLynne took charge of preserving it on dry ice and mailing it to Houston.  It arrived there safely the next day.  We will be very interested to hear about the analysis that they do there.

"World War T" (as in T-cells)

On Tuesday we returned home to Utah from Houston.  It is SO NICE to be home.  To see our children's smiling faces and feel their hugs, to look at the beautiful mountains and see our friends and neighbors that we love.  Home is awesome.  We have a dear friend who offered to buy our plane tickets to and from Houston this time.  The flight both ways was direct with no layovers.  That makes the journey so much more pleasant.  We are so blessed to be surrounded by the nicest people that can be imagined.

Graph showing the expansion of T-cells in my blood

Monday was our last visit in Houston with our Doctor.  It was a wonderful visit.  Before I tell you what he said let me tell you a little about T-cell biology.  We all have T cells in our bodies.  They are part of our bodies immune system.  T cells are kind of like the special forces in the army.  Most T-cells are keyed to look for very specific things and to defend us against them.  For example, if you had chicken pox as a child your body built specialized T-cells during your illness that would remain in your body as long as you live and continue to provide you protection as long as you live.  If, later in life you are exposed to chicken pox again, those very specialized T-cells will quickly identify the invading virus, they will latch onto it and produce replicas of themselves to fight off the infection before it ever happens.  Some people estimate that we may have was many as 25 million different types of T-cells roaming our body protecting us from a myriad of threats.  When T-cells find a threatening cell they literally punch holes in the invading cells and poison them to death.

T-cell attacking cancer cells

Okay, with all that said, lets come back to my current treatment.  The idea is that if they could find something on my cancer that was unique, different from my other cells, they could possibly create in a laboratory T-cells that were keyed to my cancer.  In my cancer they found at least two unique traits. The one that they are currently targeting is a protein on the surface of the cell called HER2.  It is a protein that is sometimes found in breast cancer as well.  The protein is only on my cancer cells, no others normal cells.  So, months ago, they took out some of my blood, isolated some of my natural T-cells and then began to genetically alter them using viruses to insert new pieces of DNA into my cells that would force them to target all cells that have HER2 protein on the surface.

There have been some other studies that have shown that if your are trying to insert new T-cells into a person that they will take hold better if you thin out the normal ones a bit and thereby make room for the new ones to grow.  So, my study thinned out my normal T-cells by giving me chemotherapy for 5 days.  Chemotherapy is hard on T-cells.  This chemotherapy had be given to me as an in patient in the hospital.  After they had thinned out my normal T-cells they then injected the newly created cells into of my veins.  It is hard to know for sure what is happening from that point on but one way that they monitor it is to take samples of blood at regular intervals after the injection and essentially count how many of the new T-cells are present in your circulating blood.  They can be the original cells that were injected or copies of the injected ones that the body has made.

So, with all that said, Monday we went to visit with our Doctor.  He and his staff seemed pretty pleased with what they had to present.  They showed me a graph of the specialized T-cell counts in my blood.  Basically the graph goes up at a very steep angle as the specialized T-cell count climbed in my blood stream.  Dr. Gottschalk told us that my response to treatment was the best that had ever been observed in the history of the research center.  Essentially those T-cells that they injected must have found my cancer, locked onto it and began replicating themselves like crazy to mount a major assault on the invading cancer.  It was amazingly good news.  .

They had warned us in advance that if the T-cell attack was successful that the areas of residual tumor would swell as they were attacked.  This has very much turned out to be the case.  I had tumor remaining in a number of places that couldn't be removed surgically because the operation would have been too dangerous.  One area was my right sphenoid sinus.  Within about 6 hours of the T-cells being injected the tissue in my right sinus/nasal passage swelled dramatically making it nearly impossible to breath through my right nostril.  It is annoying but we are grateful that the attack seems to be working.  I also had tumor in the lining of my brain.  The outside lining is called the dura matter and the cancer had spread extensively through that lining.  Again, after the injection I experienced some amazing headaches.  We believe that is from the dura lining of my brain swelling in response to T-cells attacking the cancer cells there.  I don't enjoy the headaches but I console myself thinking about those cancer cells getting beat up.

When they showed us the results of my blood work on Monday where the T-cells had expanded in number so dramatically, I found myself feeling so grateful.  For four years now we have been praying our hearts out for a miracle that would lead to a cure.  I have had a number of priesthood blessings by very righteous men.  Invariably, in those blessings, I have been promised that God would cure me.  In addition, I have so many friends and family members who have used their faith praying for me to be healed.  I know without a doubt that God has heard those prayers and seen the faith of those who have offered them.  Needless to say we had hoped that the miracle would come sooner but God is in charge and we trust him.  On Monday the thought that kept popping up in my mind was this "could this finally be the miracle that we have prayed so hard for?"  We sincerely hope that it is.  In the middle of August we will have a new MRI scan done.  Assuming that the tumor is being effected the way that we want it to be then we will return to Texas and they will continue to send in new, fresh T-cells to continue the battle.  They have them all stored in freezers down there just waiting for their turn to fight.  They have enough made for four doses.

Once again, let me thank each of your personally for your faith and prayers.  JoLynne and I can literally feel the power produced by your faith.  Thank you.  We love and appreciate you all.

A poem

Well. Here we are still doing the Houston hangout. I am feeling better mostly. All the symptoms associated with inflammation are still very prominent.  Mostly it's the headaches that drive me crazy. Both the doctor and I both feel that the tumor that had invaded the lining of my brain is probably swelling just like my sinus and my eye and that is leading to the headaches. I guess it is all supposition at this point but we are hopeful. If those tumors are swelling due to the attack  by the T cells then I'm all in favor.

Night time is the worst. The headaches are pretty bad. It makes it hard to sleep so I exercise. Last night at 1:00 am  I was going up and down the stairs to  the six story parking garage. When my legs start to hurt bad enough I forget my head. It was actually quite nice out. Very peaceful and it was a lovely view of the city from the sixth floor

We met with the doctor today again. He is such a kind man. The nurses are amazing as well. We are surrounded with the nicest people. We talked about my symptoms. He seems very encouraged by all the signs thus far.

Here is a Poem that I wrote while JoLynne was getting ready to leave for our appointment

Upon the Rock of Christ, my Lord

I've built my humble little home

It's plain and simple to the eye

But here it stands amidst the storm

The rains have come, the winds have roared

The very earth, it seemed to tear

I must confess, some damage done

But on the whole it still stood there

At first I thought, "How well I built. 

Behold the house made by my hand"

And then the truth, it softly speaks,

"Because of Him, your house still stands"

Oh God, forgive me, I am young

How quickly I would seek to claim

The credit for thy miracle done

I always knew from whence it came.

And as I live my knowledge grows

And finally I can understand

Thou art my God, who saves my soul

Not house, but Rock where on it stands

48 hours

Well the last 48 hours have been "interesting".  After five days of chemotherapy the stage was set. Monday morning they brought me in and pumped me full of fluids then brought in what we hope will be 25 ml of miracle. It was an unusual experience for me. As they prepared to inject the T cells I had a strange surreal feeling come over me. The room suddenly become much brighter. Time seemed like it slowed down or something. And I had a distinct impression that there were things going on in that room that were not readily apparent to my eyes.   Anyway the moment passed and everything went back to normal but it was strange in a good way.  They kept me around for another four hours to guard against severe reactions then they let us go home. Boy was I ever tired after that. I couldn't hardly keep my eyes open.

My right sinus has always been a little congested since my surgery. They tell me that it is partly due to the residual tumor in my right sphenoid sinus that they couldn't  remove. Dr Gottschalk had warned me before hand that any remaining tumor would likely swell when attacked by the T cells. Within six hours of the infusion my right sinus was completely blocked off. I can't move any air through that nostril no matter how hard I push.   It's annoying but not too bad. At least I can still breath through my left nostril.

As you know, I have also had visual problems with my right eye. I have issues with motor control and at times with visual clarity. When I woke up Tuesday morning and lifted my right eyelid I had lost all vision in my right eye. It was pitch black. That was a little spooky. This is probably also due to swelling. Within a few hours the image in my right eye began to come back. It is dim but it's there. Other than that I have just felt like I have a real whopper of a flu. aches, pains, throwing up, sleeping around the clock, no appetite.

So today we went back in and had some more fluid pumped in and I am actually feeling quite a bit better. Since I am only patient number two I don't think that they really know what to expect but the symptoms associated with swelling where we know that there is tumor seem encouraging to both Dr Gottschalk and to us. We are full of hope and prayers that this will finally be the way that God brings a miracle. We have been so grateful for your faith in our behalf as well. I know that sincere prayers are heard personally by our Heavenly Father. He loves his children. Of that I have no doubt.

Independence day.

So, JoLynne and I are back in Houston.  Today I finished my fifth day of chemotherapy and was discharged from the hospital.  The objective was to deplete my immune system so that tomorrow, when they implant the new genetically enhanced immune system, there will be room for them to grow.  Chemotherapy is not fun.  It makes me tired and nauseated and this time it has given me a lot of headaches.  But, if it accomplishes what they want then I am glad to suffer in order to gain the final desired result.

Tomorrow is a big day.  The actual infusion really only takes a short time.  From last time I remember that the injected cells had a golden color to them.  Oh and they smell like some weird fruit.  This dose will be much higher than what I was given last time.  In January when they did this they were still trying to determine how much could be safely given.  I was only the second patient so the dose I was given was very small.  The result of that and other experiments has shown that the maximum dose had no safety concerns.  So, this time I start at maximum dose.  I like that.  In addition, assuming that my tumor shrinks or even doesn't grow, they will give me another high dose every six weeks for six more times.  I like that too.  Last time when I was in this study my blood supply to the right side of my face was seriously damaged.  Many of the major blood vessels had been destroyed by radiation.  That makes it harder for the T cells to get where they are supposed to go.  Part of my reconstruction in Miami involved rebuilding the blood supply to my face.  Lots of fancy plumbing work.  I think that should also work in my favor.  But, mostly we are relying on the hand of God to direct the affairs of my health.  Only He knows ultimately what the outcome will be and when I am cured, I will gladly give the credit to Him.  He is in charge and for that I am eternally grateful.  We are ready to celebrate "Independence from cancer" day.

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.

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.