"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.

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.

Twas the night before surgery......

View from our backyard

Me and Beautiful JoLynne 

Well, here we are in beautiful Florida waiting for surgery.  We met with Dr. Marx yesterday to talk about the surgical plan.  There has been an active discussion going on between my doctors in Provo, Houston and here.  My infectious disease doctor in Provo says that I have a psuedomonas infection in my wound adhering to the metal that was put there during the first surgery.  Psuedomonas is a nasty bacteria that is really good at evading antibiotics especially if there is metal present.  So, after some discussion it was decided that my reconstruction will be done in stages.  Stage one, tomorrow, will involve removing all of the dead and radiation damaged tissue and also debulking any tumor that they may find. and then using tissue from my tummy or thigh or both to close up the holes in my face, mouth and sinus.  At this point they are going to leave me without a right jaw bone while the infection heals up.  Honestly I believe that even without a jaw bone I will be a lot better off than I am right now.  My current joint doesn't work at all and most of my problems are from dead tissue and holes where there shouldn't be holes.  In 4-6 weeks they want me back in Houston for more T-cell therapy at a higher dose.  Then in a few months, I will come back to Miami for the jaw bone reconstruction.  At that point we may do it in titanium or perhaps grow a new jaw bone and do it with cloned bone tissue.  Dr. Marx is a pioneer in that field.

Enormous crocodiles

I don't know why, but after our visit yesterday I was just kind of discouraged and anxious.  Dr. Marx didn't tell me anything unexpected but still, that is how I felt.  Not too long after our visit our daughter Shanelle called up and talked for a while.  Cute little Vivian in the background was chiming in too.  She is so verbal for a two year old.  I can hear her in the background telling her mom "Mom, I'm constipated.  I don't want a suppository."  What two year old talks like that?  She makes me laugh.  Shanelle and Vivian are going to come to Florida about two weeks after my surgery.   I told Vivian that we might go see crocodiles.  She said, "Are they enormous crocodiles with secret plans and clever tricks?"  Her dad has been reading Roald Dahl to her and it shows.  After talking with them the shadow lifted and I felt good again.  I have a sweet, inspired daughter. (and a dang cute granddaughter)

Don't forget the ear.

I dreamt the other night that Dr. Marx forgot to re-attach my ear in the surgery.  When I woke up from anesthesia I noticed my missing ear and brought his attention to it.  He looked and shrugged saying, "Drats, I hate it when I forget those things.  Oh well, no big deal, we'll buy you a rubber one to wear.  Lots of people have those."  Dreams are so dumb but in my dream I kept wondering how I would keep my glasses on at work with only one ear.  I should have mentioned my dream to him during our consult yesterday but I just couldn't find the right time to bring it up.  I don't think he will forget my ear.  We had our consult in his office.  He has so many awards that it literally filled up all four wall from top to bottom.  He may have to retire soon, there is no more space on the walls.

In the meantime, thank you all for your prayers and faith.  JoLynne and I have come to depend on them.  Thank you.

Tick Tock Tick, Tock.....

Well, I am two weeks closer to my surgery.  Only 5 weeks left to wait.  The surgeon tells me that as soon as I wake up I will be able to open my mouth to a semi normal width....  I can almost remember what that is like.  Right now I can open my mouth just barely larger than my little finger.  The surgeon tells me that we will need stay in Miami for about a month after the surgery to make sure that there aren't complications.  I can think of worse places to have to stay.  Miami should be lovely.  JoLynne has a knack for finding nice places to stay.  She searches all these varied websites where people are renting their houses.  The house she found in Miami is truly beautiful.  Very nice,  looking out over a lake.  It will be nice to have a nice place to recover in.

We have loved having our sweet son Peter home from his mission.  He has a glow about him.  He still stomps me at ping pong but he is so nice about it.  Every time he destroys me in a ping pong game he comes around the table, hugs me and tells me he loves me.

In general my health is greatly improved.  It's so nice to have some energy back again.  I still deal with pain but at least I have some energy.  This weekend I planted my garden, scrubbed my fish pond and moved all the rabbit droppings into my garden.  I kind of wonder why things grown in animal pooh taste so good.  Maybe it's best not to think about that.

A VERY GOOD DAY!

Today I finally heard back from our doctor in Houston, Dr. Wang.  She called me just as I was finishing patients for the morning.  We have been pretty anxious about this call.

So, she said that the scan showed no tumor growth.  In her words, "This is the best possible outcome we could expect at this point in the trial."  She told me that because my cancer creates bone, it will take time for my body to remove the bone tissue that had been made,

This is the part that had Dr. Wang really excited.  As part of the study last Tuesday they gave me a chicken pox vaccination.  The genetically altered T-cells have been programed to be responsive to the chicken pox virus.  So the idea was that giving me a vaccination would cause the T-cells to become more active.  Well, by Tuesday night I was hurting quite a bit.  By Wednesday morning at 5:30 am the pain had become excruciating.  It felt like someone had cut a hole in the top of my head and was pouring boiling water in the right side of my head.  I was literally running around the apartment holding my head in both hands.  I needed to get some pain medication but I was hurting so much I couldn't compose myself to get it ready.  Sweet JoLynne came running out of the bedroom to my rescue.  So after dumping a bunch of pain medication in my stomach tube JoLynne sat and rubbed my feet trying to get the pain to ease off.  It finally did, thank heavens.  Then the drainage from my wound really ramped up.  The bandage just kept filling up with drainage.

So I don't think that they expected such a dramatic response to the vaccination.  Frankly I didn't either.  Now it has been several days.  My face is still burning but not as bad.  Still lots of drainage.  I told Dr. Wang what was happening.  She was pretty excited.  She took my case to a conference today and presented it.  The other doctors were excited as well.  She now wants me to keep a daily diary of everything I experience.  She wanted JoLynne to retrieve my yucky bandages and gauze out of the garbage and send it to Houston for analysis.  She said that given my response we should have no hesitation in scheduling our reconstruction surgery in Miami and she wants them to preserve all the bone they remove and have it frozen and sent to Texas for analysis.  After talking to her on the phone it felt like they believe they have discovered something important in cancer treatment.  She was very upbeat.

God answers prayers

JoLynne said "You know, Dr. Wang is so nice, God would have no problem revealing something important through her."  I agree wholeheartedly.   JoLynne and I spent a good part of the afternoon crying  We are so grateful that God is providing this miracle to preserve my life.  The day of miracles has not passed.

Genetic engineering and automobiles

Car with genetic engineering

Do you remember the movie Groundhog day?  It seems a little like that.  We keep leaving and then waking up back in Texas.  Maybe I need to get just one day right to get out of this.  That might be hard for me.

Friday I had a new MRI taken.  The technician asked if I had ever had one before.  I couldn't help it, I  just laughed.  The MRI was normal, a little tube and lots of noise.  As we were leaving the hospital we saw a rather unusual car.  Maybe it's because we are hanging out in the genetic engineering part of the hospital.  I'm wondering if perhaps they got their hands on this car and this was the result.

Yesterday JoLynne and I went to tour the battleship Texas.  I don't know why it seems so appropriate that we should be looking at a battleship.

Bring on the big guns

Today was Sunday and we went to church with our son's best friend Alden.  It was great.  A wonderful young ward.  Full of life and energy.  Alden's son reminds me of our kids.  Really cute and kind of solid.

JoLynne' fancy flowers

Well, we have till Tuesday before we will know the results.  It is hard to wait.  I still feel at peace.  I really have no idea what they will say but I feel in my heart that we are in the right place so it will all turn out somehow.

I picked JoLynne's Valentines flowers today as we were walking down the train tracks.  We're keeping it simple here for the time being.

Another trip

Tomorrow we leave again for Texas.  Friday we will have a scan and Tuesday we should have the results.  Usually I really get nervous leading up to these scans.  Maybe that will still come but right now I feel an amazing sense of peace.  My bishop came over tonight and with my son Jarom gave me a priesthood blessing.  Maybe that is why I am feeling so calm.

We have a wonderful doctor in Texas.  Her name is Lisa Wang.  I get the feeling that she isn't very religious, but she is exceptionally kind.  She emails me on a regular basis just to see how I am doing.  Last time we were in Texas she kept trying to lend us her small appliances so that we wouldn't have to buy them.  So, in response to her last email I told her a story.

I was at work.  One of my patients had brought her young daughter Olivia along with her to the appointment.  As I was talking to the mother Olivia said "How come you talk like that"  (My speech is rather impaired these days)  Before I could answer Olivia pipped up again and said "Oh, I remember, you have cancer.  We pray for you every day."  Then she said, "I  like your bandaid.  It's really big."

i told doctor Wang that story.   I think she was a little taken back that I would have a practice where my patients would pray for me.  I told her, "It's no wonder that I love my job so much."

I feel so blessed to have people who care about me.  These last three years have been hard but they have had good in many ways.  I find my heart is softer than it was.  I hear about people who suffer and it hurts.  I cry a lot.  Not very macho but it is what it is.

Well, it's off to Texas.  We will keep you posted about our scan results.  Thank you Olivia for your prayers and all of the rest of you too.  I know that God hears and answers prayers.

Wow, a vacation that didn't include an emergency room

Me with this gorgeous babe I picked on the beach

We just returned home from our "secret" cruise.  It was only four days but it was lovely.  We have had a lot of trouble with vacations for the last little while.  I realized when we returned from this cruise that this is the first vacation we have gone on in a year that didn't have to be ended abruptly with a trip to the emergency room.  We are so grateful!  We are getting a bit paranoid.  JoLynne even bought trip insurance this time, something that we never do.  If I had come down with problems it would have paid to have me transported to medical help and a few other things.  Boy am I glad we didn't use that insurance.

She even has cute feet

It was a simple trip.  We spent a day in Key west where we rented bikes and explored the island and played on the beaches.  It was really fun.  The next day we were in Cozamel Mexico.  That island was a bit too big for bikes so we rented a car.  We went to the bakery and bought yummy Mexican bread and found a restaurant with really delicious food and then played on the beach until the sun went down.

It was the super bowl on Sunday.  I have a confession to make.  I didn't even know who was playing. Our family is so into football.  So, just about everybody on the ship was watching the super bowl and we were playing rummy in the empty dining area.  All in all we just had a great time.

You know it's nice when you have garbage just for coconuts

We put our children on a plane to fly home and JoLynne and I are headed back to Houston to meet with our doctors again.  We should be home in Utah tomorrow night for about 10 days.  After that it is back to Houston again for a chicken pox vaccination.  It's kind of a cool idea.  They programed the DNA in my new T-cells so that when I get a chicken pox vaccine the new T-cells go crazy because their programed to be triggered by chicken pox but attack my cancer instead of chicken pox because that is all they are capable of attacking.  At least that is the idea.  We will get a scan at the same time that will tell us how effective this all has been.

I began reading the Book of Mormon again.  Sunday I read the story about Nephi and his brothers trying to get the brass plates.  Things aren't going too well.  Laban, who has the plates, isn't eager to give them up.  He has already told them no and stolen all of their silver and gold.  Nephi's brothers have seen and angel and still they murmur.  Nephi then makes a speech that I like.  He says, God can defeat Laban and his 50 men, for that matter he can defeat Laban even if he had 10,000 men.  Don't you remember Moses and the armies of Pharaoh?  Nephi then goes into the city, not knowing beforehand what he would do.  And God provides the way.

Pretty nice for January

So, first of all, God can defeat this cancer.  Statistics mean nothing.  What is too hard for God?  Secondly, we are going into this "not knowing beforehand" but we trust that God will open the way.  We just need to have faith.  So that is what we are working on, faith without any doubts.

More promising signs

Nurse JoLynne

We met with the doctors again yesterday.  This time it was with both research doctors, Dr. Wang and Dr. Gottschalk.  They were both very interested in the swelling around the known tumor sites.  JoLynne told them that she had been peeling off bone from inside my wound.  I'm not sure if I mentioned that before.  We have several areas of known tumor.  One of them we can see plain as day though the gapping hole in the side of my face.  It looks like a mound of bone that grew out of my natural bone.  The other day JoLynne was poking at it with her tweezers while changing my bandage and chunks of it started coming off.  She kept at it for some time until she had a gauze full of dead tumor bone laying there.  Sometimes I am grateful that I have no nerve in that part of my face.  I just kind of assumed that this was dead tumor caused by radiation 18 months ago.  The research doctors felt that was unlikely after so much time and were more inclined to think it was being killed by T cells.  The doctors decided that they wanted to take a look inside of my wound.  I warned them that it wasn't pretty but they wouldn't be dissuaded.  So JoLynne took off the bandages and you could kind of see their jaws drop.  In the awkward silence that followed JoLynne said "Few women have been able to see inside their husbands head quite like this"  That broke the tension.  We all had a good laugh.  That JoLynne, she is a funny girl.  Anyway, they took some samples from the wound and JoLynne put the bandages back on.  The doctors wanted to know where she had her nursing training.  She smiled and said, I'm not a nurse.  I have a degree in zoology.  Eric is my only patient.  Anyway, swelling around the tumor in my temple continues.  The amount of drainage from that area has more than doubled in the last few days.  All of those are encouraging signs.  I hurt more too, which I don't like but if that means it's working, I will deal with it.

A sneaky cruise:  Don't tell!

On Monday we fly to Miami to meet with a reconstructive surgeon.  He is a very famous oral surgeon and we feel so grateful he is willing to see us.  After that we are flying Adam and Elizabeth to Miami and going on a four day cruise.  We told our doctors here we were going to Miami for the reconstruction consult, they were okay with that.  We didn't tell them about the cruise.  Sometimes it is easier to ask forgiveness than permission.

Ninja turtles

Well, it has been four days since the T-cell infusion.  I haven't mutated into a Ninja Turtle yet, that is a little disappointing but oh well.  Actually I feel really good.  My face is a little more swollen and tender.  Normally that would be a worry but they told us that if the T-cells did what they were designed to do that the tumors would swell when they were attacked so maybe swollen is a good thing!

I have had such a hard time gaining or holding onto my weight, especially recently.  Not being able to eat and swallow well by mouth doesn't help matters.  Anyway, I am working on that.  JoLynne wants to lose some weight.  I have a tube that I use to put food directly into my stomach.  I tried just connecting the tube between us
for a direct transfer.  I'm not sure if it worked.  She looks thinner to me.  I will try it again today.

Actually I started tracking my calories.  My son told me about a program called "Lose it".  It is a phone app but it's pretty amazing.  Mostly you just scan the bar codes of the food you are eating and it puts it right in.  So I set my current weight, 152 pounds and my target weight, 180 pounds.  Well, the program didn't know what to do with that.  I guess that is what you get for trying to gain weight with a program called "Lose it".

T-cells...attack!!!!

Well, I should have posted sooner.  I'm sorry.

After multiple flight delays out of Salt Lake we finally arrived here in Houston.  I think we fell in bed at 4:30 am.  Ughh.  Monday I had a physical and consultations with the doctors.  They were amazingly nice.  There were two doctors, Dr. Wang and Dr. Gottschalk who spent over an hour with us explaining the procedure, what the side effects might be, what the hoped for outcome might be, what other studies were beginning that might be applicable to me.  They were so good to us.  I can't think of the last time a doctor spent an hour talking with me.  Wow!

I passed the physical with no problems and they were thrilled to have me here to participate in their trial.  I am the second patient to qualify for the study.  We didn't really asked how patient #1 is faring, it isn't relevant frankly.  Anyway, they told us to return on Tuesday at 9:00 am to start the infusion.

Monday after we left our consults I had a call from a Dr. Marx in Miami.  He is a very famous oral surgeon.  I had sent him an email with pictures of my wound and asked if he could help me.  Reconstructing my face is no small matter.  We have talked to multiple doctors in Utah and they all tell me how incredibly complex my reconstruction will be.  Anyway, he called and talked to me for over 30 minutes.  He said that treating advanced osteoradionecrosis (that is what I have, severe radiation burns that have destroyed my jaw and my skin on that side) is what he does for a living.  He felt that I was very treatable and talked at length about how he would do it.  We have an appointment in Miami on January 27th to meet with him.  After we got off the phone JoLynne and I just sat in the car and wept.  Just before this started JoLynne had an impression.  "Sit down, buckle up and prepare for quite a ride"  She felt like long prayed for miracles were about to begin.

Tuesday we showed up not knowing really what to expect.  Usually my chemotherapy infusions take all day.  So, there were three doctors and about that many nurses there to watch or help.  Finally they showed up with this really little syringe.  It had maybe 2 cc of golden fluid, less than 1/2 teaspoon.  There was lots of paper signing and witnessing etc.  Then the infusion.  I think it took like one minute.  JoLynne asked later how so little fluid was going to be enough to do the job.  The doctors told us "If this goes as planned those little T-cells will seek out your tumor and when they find it they will begin to replicate themselves like crazy until there are enough to do the job"

With immune therapy they hope to boost your immune response.  In a few cases it goes overboard and initiates something called a cytokine storm.  Basically your immune system goes crazy and you die.  So, they were watching me really close.  I had my own nurse for the next four hours, she basically never left the room.  When they genetically engineered these cells they built in a biological cut off switch  into the genes.  If everything is going wrong they can give you a drug that turns off all the infused cells.  The doctor told us that the cut off switch was embroiled in a patent dispute and that technically they couldn't use it because of the court battle.  But, he said, "I have the drug here in the hospital and if you start going downhill I will use it and deal with the legal complications later."

Well, with all that said, I had no ill side effects.  Except that I was sleepy but I think that was from not sleeping enough.

Blurry Houston Temple

Wednesday I felt great and ran a mile on the treadmill and lifted weights and went to the temple that night.  Today I felt great too.  I ran another mile on the elliptical and lifted weights again.  My face is hurting a bit more.  I don't know why but they did tell me to expect the tumors to swell when the T-cells attacked them.  Perhaps that is the reason.

Last night at the temple was so good.  I am pretty emotional these days.  Last night was just such a good session.  I spent quite a bit of time crying in the celestial room after.  I just had this overwhelming feeling that God loves me and that the priesthood blessings given to me and the miracles we have prayed for these last three years are about to be fulfilled.  I am so grateful for a loving Heavenly Father.

Well, here we sit, praying for T-cells.  Who would have thought that would ever be the center of my prayers but so it is.

"Where no man has gone before"

Well, today we leave for Houston.  It's hard to leave our children but we are grateful and our older son Jarom and his wife Natalie are willing to come and stay with them.  Still, we will miss them.

"Where no man has gone before"

On the other hand, we are full of hope that this treatment will finally bring us the answers that we have prayed for these last three years.  Conventional cancer treatments have simply proved ineffective.  But, they did save my life this long so I am not complaining.  The research that they are doing in Baylor simply wasn't available 3 years ago.

I don't know why my journey has been so convoluted.  Honestly we expected to be cured the first time around.  We had faith.  I don't always understand God's ways.  I guess that is why they call it faith.  Even though I don't understand I still trust Him.

Sometimes we are all so quick to judge our lives with the perspective of a moment.  I think that God sees a bigger picture.  I have a story that I heard once that I really like.  Here it is:

One day in late summer, an old farmer was working in his field with his old sick horse. The farmer felt compassion for the horse and desired to lift its burden. So he left his horse loose to go the mountains and live out the rest of its life.Soon after, neighbors from the nearby village visited, offering their condolences and said, "What a shame.  Now your only horse is gone.  How unfortunate you are!. You must be very sad. How will you live, work the land, and prosper?" The farmer replied: "Who knows? We shall see".Two days later the old horse came back now rejuvenated after meandering in the mountainsides while eating the wild grasses. He came back with twelve new younger and healthy horses which followed the old horse into the corral. Word got out in the village of the old farmer's good fortune and it wasn't long before people stopped by to congratulate the farmer on his good luck.  "How fortunate you are!" they exclaimed. You must be very happy!"  Again, the farmer softly said, "Who knows? We shall see."At daybreak on the next morning, the farmer's only son set off to attempt to train the new wild horses, but the farmer's son was thrown to the ground and broke his leg.  One by one villagers arrived during the day to bemoan the farmer's latest misfortune.  "Oh, what a tragedy!  Your son won't be able to help you farm with a broken leg. You'll have to do all the work yourself, How will you survive? You must be very sad".  they said.  Calmly going about his usual business the farmer answered, "Who knows? We shall see"Several days later a war broke out. The Emperor's men arrived in the village demanding that young men come with them to be conscripted into the Emperor's army.  As it happened the farmer's son was deemed unfit because of his broken leg.  "What very good fortune you have!!" the villagers exclaimed as their own young sons were marched away. "You must be very happy." "Who knows? We shall see!", replied the old farmer as he headed off to work his field alone.As time went on the broken leg healed but the son was left with a slight limp. Again the neighbors came to pay their condolences. "Oh what bad luck. Too bad for you"!  But the old farmer simply replied; "Who knows? We shall see."As it turned out the other young village boys had died in the war and the old farmer and his son were the only able bodied men capable of working the village lands. The old farmer became wealthy and was very generous to the villagers. They said: "Oh how fortunate we are, you must be very happy", to which the old farmer replied, "Who knows? We shall see!" 

I will try to keep this blog updated as we progress through treatment.  Thank you again for your prayers, your faith and your friendship.  They mean the world to us.

Cast off the anchor ropes, raise the sails!

Monday was my last chemotherapy ever I hope.  Only time will tell but I can hope.  I have been bald so many times now I have almost forgotten what I look like with hair.

As is often the case, the full impact of the chemo doesn't hit you until a few days later.  So, yesterday was a hard day physically.  I just felt run down from the moment I got up.  Everything hurt more and my wounds just wouldn't dry up.  When I have a hard day physically it makes it hard to have a good day emotionally.  They go hand in hand whether I like it or not.  I came home at lunch just dragging.  Sweet JoLynne got home shortly after I did.  I'm a little embarrassed to admit that I had been at home crying, but oh well.  JoLynne is amazing.  She never scolds me, just puts her arms around me and tells me "it's going to be alright, it's okay to get discouraged"  I don't pretend to understand why things are the way that they are but when JoLynne puts her arms around me I can physically and emotionally feel the stress flow out of me.  She has something magical about her.  I am so grateful!  The problems feel the same size but somehow I feel bigger with her there by my side

Ah, picc lines, so much

Today I feel much better.  I just woke up feeling better.  They took out my picc lines today.  After four months I was more than ready to be done with them.  It so so strange to have them pulled.  It doesn't hurt but the lines are pretty long.  They kind of just "reel" them out of your vein.

My treatment date in Houston has been moved up to December 29th.  The researchers called and said that my T-cells grew very nicely and are all done.  They have 12 batches of genetically modified T-cells sitting in the freezers, waiting to be injected back into me.  All that is lacking is the FDA to come and sign off on the batches and a free hospital bed.

May God's wind lead us safely there. 

With my picc line removal and the treatment date moved up I feel like a ship casting off.  "Cast off the anchor ropes and raise the sails"  There is something reassuring about being tied to an anchor rope but the reality is you never get to your destination until you lift the anchor.  Raising the sails has risk but the time comes for taking risks if you want to get anywhere.  I'm ready!

Another blog

Isn't language interesting.  Twenty years ago if I told someone that I was going to blog someone would have probably handed me a bucket to catch it in.  Now it means something completely different, or at least I hope so.  Hopefully what I write is more than verbal vomit.

This last Monday I had blood collected for the clinical trial in Texas.  I came into the doctors office holding this fairly large box full of empty vials and handed it to one of my sweet nurses.  She took one look and said, "Wow, that is a lot of blood."  About two thirds of the way through she couldn't get any more to come.  I wondered if I had run out but she managed to pull a little more and finish the job.  I'm still here blogging so I guess that something is still circulating in there.

Kids in Oregon after we abandoned them

Monday afternoon I had a "PEG tube" put into my stomach.  I have really been struggling to swallow. I just can't direct traffic in the back of my throat.  Sometimes the food goes down, sometimes it gets stuck, sometimes it comes out my nose, sometimes it goes into my lungs.  They think that is the reason I got pneumonia this last week.  Sometimes you just have to laugh.  A few days ago I had just eaten dinner and had run over to a friends to take them some tomatoes.  As I was getting out of the car I sneezed and out popped a carrot, not a small one.  I just looked at that and thought "Oh brother".  Anyway, with this tube directly into my stomach I can still keep nourished and not have carrots popping out of my nose.

It was an emotional day for me.  I remember looking at that box as we sent it off to Texas via FedEx thinking, "Okay God, now you have my blood, turn it into a miracle."  It seemed so final.  Then getting the PEG tube seemed like another admission to my declining health.  Arghh, I hate that.  I just kept repeating in my mind, "prepare for a miracle Eric"  We are full of hope and we trust God.  Sometimes I just think "I believe, help thou my unbelief."  It's hard to have perfect faith all of the time.

My angel wife and our granddaughter

I talked to the lead scientist today from Baylor.  She is very nice.  It sounds like treatment will probably begin January 5th.  It will take that long to engineer the cells.   Probably we will need to stay in Texas for about 6 weeks.  This is a phase one trial meaning they are testing safe doses.  She told me that it appears that the initial dose that they had thought to start with appears safe so she is going to jump me up to the next dosing group right from the start.  That is good news to me.  She also said that my blood shows that I am positive for another marker, HER2.  That is also good news.  If the GD2 doesn't work they can try the HER2 instead.  She believes a trial against osteosarcoma using HER2 will begin within a few months.

In the meantime, I haven't had chemotherapy for almost three weeks now and boy do I feel good.  I just love how I feel when I'm not being poisoned.  Chemo will begin again on Friday so I will try to enjoy feeling human again even if it is only for a few days.

If joy had a face, this would be it.

This last week we had most of our children with us.  Seth had flown out to go to his cousins ring ceremony.  Shanelle, Mike and Vivian came to bring our car back from Oregon.  That was a clever way of us to get them to come.  Sunday we took up the entire row with our family.  That made me happy.  It was like the good old days.  They have all gone home now but it was nice while it lasted.

"There and back again"

I should take a few minutes and detail what's going on around here.

Well,  on Sunday we flew to Houston Texas to meet with doctors and scientists involved in clinical trials.  There are several studies that I am interested in at MD Anderson cancer center and one being done, literally across the street at Methodist hospital under the umbrella of Baylor university.  It was a fast trip.  We landed at around midnight on Sunday and had appointments on and off Monday, and flew home Tuesday afternoon.

MD Anderson is an amazing hospital.  They are dedicated to finally finding a cure to cancer and are committing enormous amounts of money to just that.  I read in one of their press releases that they felt that we should spend as least as much to cure cancer as we did on the moon program if we want to find a cure.  Anyway, they are hard at it.  We got checked in there and in the meantime the lead scientist from Methodist arranged to run over and meet us at a coffee shop in the hospital.  Her name is Lisa Wang and a super nice person.  Her study is one that was suggested to us by my brother in law Troy and in all our research we have never crossed this one off the list.

The concept is pretty cool.  Basically it is this.  The body has a system to fight cancer, unfortunately it doesn't always work well enough.  One of the body's defense forces are called T-cells, sometimes called T killer cells.  Basically they roam the body looking for anything that doesn't look right.  If they find something messed up, like cancer or other things, they hook on to whatever it is and destroy it.  The problem with cancer is that sometimes cancer has developed ways to hide from the T-cells or the T cells get tired before they finish the job.

In this study they take T-cells from your own body and genetically enhance them.  They give them special targeting DNA that makes them just look for one thing, in this case my cancer.  It turns out that my cancer has a unique marker in the cell membranes called GD2 which isn't really found on any cell in the rest of my body.  So, instead of looking for anything that is amiss, these genetically modified cells only look for osteosarcoma.  Secondly they put other DNA in the T-cells that makes them live longer and get tired more slowly.  Once they have these super T-cells they begin to clone them outside of your body until they have a whole host of them then they re-inject them into your body.   Anyway, it is a phase I trial, meaning early research, no guarantees, but the concept has worked well in neuroblastoma patients, who also have GD2 and a similar concept has been successful in treating adult leukemia, it also works really good in mice.  So, they were excited to have me join their study.  I am a perfect match.  The study plans to include 26 people.  So far they have treated one.  Almost no side effect to treatment because it is so narrowly targeted.

We then met with scientist/doctors at MD Anderson.  They were also very nice.    They had a few studies there that might be applicable to me.  Interestingly enough of the ones I was aware of two had been put on hold due to supplier problems and one wouldn't open until November, maybe.  I asked them if they had heard of this GD2 study and they knew of the concept but didn't know that one was going on across the street.  Both doctors said, "This is the best study for you to do.  You should use ours as a back-up plan if this doesn't work"

I guess I had hoped for  a pillar of light or at least an angel directing traffic to be visible.  I left wondering "Is that's God's way of showing us the way, by simply making the other studies unavailable or having other doctors push us back the other way?"   Maybe there was an angel directing traffic but he seemed to be dressed in undercover clothing.
Tuesday we went to the temple in Houston.  It was beautiful, as always.  We had a good session, no burning bush but a sweet peace that we always feel in the temple.  Wednesday our son Jarom sends me a text with an article link just out that day.  The title is "Lab made blood cells hunt cancer, leading to remissions" and it is all about the research on T-cells that I just described.  http://www.theverge.com/2014/10/15/6985201/lab-made-blood-cells-hunt-cancer-leading-to-remissions 
It was hard to read that article, my eyes seemed to have a forecast of "frequent rain showers".  Again, why that article right then?  Maybe God nudging us in a certain direction.

Here is our honest belief:

• God can heal me whenever He wants and however He wants
• My healing may happen at the hands of men, guided by God
• If others can be blessed by the way in which I am healed, then so much the better.

Shanelle and Grandpa

Cute Vivian at the beach

Adam, Vivian and Elizabeth

Well, Wednesday was fall break and we decided to drive to Oregon to see our Daughter Shanelle, and Mike and Vivian.  We took off late Wednesday and arrived just after dinner on Thursday.  Honestly I didn't feel very well much of the trip but it was so nice to see Shanelle and her family.  Wow did that make me happy.  We went to bed Thursday night at Shanelle's house and I had a bad night.  Lots of pain, fever, chills and yuck.  Poor JoLynne in the middle of the night rubbing my feet and trying to help me stop shaking.  We finally got out a thermometer and I had a temperature of 102.3.  We went down to Mike's office in the morning.  He found I had an ear infection and was worried about what else it might be so he called my doctors in Utah.  They were worried I might have sepsis again and said I needed to get home ASAP.  We booked a flight out of Eugene and spent all last night in the ER.  The blood cultures are not back yet but what they do know is that I have pneumonia and an ear infection.  And that there is no  cancer in my throat or tongue.  We were worried about that due to my trouble speaking and swallowing.  Mike had given me a strong antibiotic in Oregon and maybe it is a coincidence but maybe not, within 24 hours my speech is quite a bit better.  Hopefully that is infection related as well.

We still have one study at UCLA we are looking at.  We should know about that within the week.  It is using T-cells as well.  Either study would require at least 8 weeks to get started.  That is how long it will take to clone the cells.  As always we appreciate your faith and prayers.