"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.

FaceTime

Well, we finally have a surgical date to reconstruct my face.  It will be April 17th in Miami.  We had hoped it would be earlier but it turned out to be complicated to schedule the operating room and all the surgeons at the same time.  So, April 17th it is.

I am really doing pretty well these days.  I even have hair.  JoLynne told me the other day my hair was pretty so I guess I was having a good hair day.  That's a nice change from a no hair days which is what I usually have.  So far it is straight and maybe a little more gray.  I think I earned it.

Most of my struggles these days are with pain.  Most of the pain is in the lower area of my jaw where all the tissue is dying.  We sincerely hope that when they cut that all out my pain will begin to improve.

I have been trying really hard to gain weight.  They need to take skin from somewhere and it seems my tummy is the most promising spot.  The micro vascular surgeon left me with a strong injunction to "Gain weight"  He wants me to stretch out that tummy so that he has more skin to work with.  I have never really paid much attention to what I eat but now I am being forced to.  I'm trying really hard to get 4000 calories a day.  It's harder than you might think, especially when it is hard to chew and swallow.  We have found that Costco vanilla ice cream has 650 calories per cup.  I can melt that and pour it in my tube.  Sometimes when I really come up short I just dump straight olive oil in my tube.  That has a ton of calories and it keeps you so regular.  When this is all done I may write a diet book "The olive oil diet miracle."  Who knows, it might be a best seller.

"Faith as a grain of mustard seed"

There is so much uncertainty in my life right now.  I have held off writing, hoping for more answers.  Well answers will come as they do.  It is challenging to not see more than one step ahead of you.

Last week we left for a family vacation in Boston.  On son Seth is there in medical school and we were looking forward to having the whole family together again with him in Boston.  I have had a small growth in the back right side of my mouth for some time.  We have had a biopsy of it done and it was simply scar tissue.  I had been feeling great.  No pain meds, running in the mornings, swimming and biking.  Almost normal.  Just before we left I thought the bump seemed a bit bigger and looking at it with my intra oral camera it did seem bigger.  I showed it to the doctors but they said not to worry, we were having a scan done August first and we would look at it then.  It had never shown activity on any previous scans.

So we left for Boston.  First night we came in late and went to dinner with Seth.  It was great.  Then we rented a car and drove to New York to watch the pagent, go the sacred grove and other church sites.  It was really wonderful.  Many years ago, I spent a whole summer living on the back of the hill Cumorah helping to build the stages and sound system  It was a remarkable time in my young life.  We lived in a barrack on the back side of the hill and the church hired a cook to keep us well fed while we worked.  There was about a dozen of us young 17 year olds.  This was my first time back to the pagent since I was 17.  It was great to be back there.  Walking through the sacred grove filled my heart with joy.

In the meantime, I was starting to have more pain.  Back to tylenol and ibuprofen every six hours.  I was feverish and having trouble swallowing.

When we got back to Boston we contacted our doctors at Mayo.  They advised us to go the the ER there in Boston.  We went and spent a whole day there.  They took a CT scan and finally came in to advise me that it appeared that my cancer had returned and had spread up the right side of my head, behind my eye and into my brain, temporal lobe.  They felt like with my case complexity and all that I would be better off at Mayo where the doctors knew me.  There was a lot of discussion about an emergency tracheotomy (where they cut a hole in your throat and put in a metal plate to keep the hole open.  this insures an airway)  They also talked about life flighting me to Mayo.  I finally told them, "look, I'm having no trouble breathing, I don't want an emergency tracheotomy.  Call an ENT if you don't believe me about the airway."  The ENT came in and confirmed that my airway was wide open.  The crazy talk continued though.  I have decided that some doctors are just crazy.  One oral surgeon came in, one of the senior residents, and said, "open your mouth"  Well, I can't really open very wide these days.  I did the best I could.  He said "Why aren't you opening?"  I told him, "That's as far as it goes".  He said,  "I don't believe you, you're just not trying"  At that point he grabbed my upper and lower jaw with both hands and tried to force it open.  Of course it wouldn't move.  Then he got all frustrated and said, "Why are you even here, what do you want from us?"  Yup, the king of bedside manner.  Finally we just told them,  "We are done,  give us a copy of our CT scan.  We are leaving"

So, we left our children in Boston with Grandpa and Seth and we got a flight to Mayo.  The doctors there were super accommodating.  They all squeezed me into their schedules.  The did a PET/CT scan, new biopsies and a lot of consults.  No one could say much without the biopsies but the assumption was that the cancer was back.  The surgeon said "inoperable, incurable, but with the right chemo maybe we can buy you some time"  Everyone else pretty much concurred with that.

Thursday we went to the temple.  On our way home the first biopsy came in.  All was negative for cancer.  We were elated.  They wanted more biopsies from other areas.  Friday they did 6 more biopsies with an 18 gauge needle.  That is a pretty good size needle.  Think pencil lead size.  They were tracking the position of the needle with ultra sound.  I watched the first couple that it got to be too freaky and I quit watching.

At that point there wasn't much more we could do but wait so we flew back to Boston to be with the kids again.  Seth had done such a good job entertaining them.  They had swam in Waldon pond, kayaked on the Charles river, Gone to all sort cool historical places.  He is a great brother and tour guide.  We only had a day and a half when we got back but it was good.  We went to the horse race track.  I had never been to one of these before.  We figured out how to place bets and then made our bets using swedish fish.  Natalie was the "bookie".  Most of us lost all our fish by the time it was over,  Obviously the bookie came out best overall.  She was nice and shared her fish with us.  We went out to tangle wood to a Boston Pops concert that night.

We got back to Utah on Sunday night late.  Because of the swelling we got an appointment with the infectious disease doctor who had treated me earlier.  We had Mayo send out any records that they had.  This was a hard visit.  The doctor read through every thing from Mayo and then told us that the biopsies showed positive for osteosarcoma in every area.

Have you ever had a dream where you were falling and you could hardly scream because you were so scared.  I guess that is kind of how it felt.  Like a terrible bad dream and you just wanted to wake up and find out it isn't real.  The doctor basically said, "What are you going to do?"  At that point we were kind of in shock but neither JoLynne or I are ones to give up easily and we told him so.  He said "There is no reason for you to suffer, we have lots of medicines that can stop your pain"  I have had a lot of pain lately.  He was concerned that there may be an infection on top of the cancer so he started me on IV antibiotics that same day.

So, here we sit.  I have an appointment with Dr. Wallentine on Tuesday.  Mayo has ideas about chemo agents that have worked on others in the past who didn't respond to first line drugs.  There are some clinical trials we are looking at.  There have been a lot of tears.  Tuesday night I ordained Spencer and Elder, preparatory to his serving a mission.  Right after that he helped his brothers give me a beautiful blessing.  Wow, I didn't know I could cry that much.  Then he helped while I gave JoLynne a blessing. How grateful we are for the priesthood.

We don't know what the future holds.  But there are things that we know without any doubt.  We know that God loves us and is aware of our situation and is standing by our side through the hardest parts.  There is nothing in this world that we are more sure of than that.  JoLynne and I know that we have made covenants in the temple of God.  Those covenants promise us that we will be together for eternity if we are faithful.  We know that Christ conquered death and because of Him we will live again as well.

So right now we are just begging God for more time.  We have laid before Him our best arguments and poured out our hearts to Him.  We know that if it His will, a miracle will happen and my life will be spared.  We love Him and we trust Him.  We know that many of you have offered up prayers in our behalf as well.  We are so grateful for your love and faith.  Yesterday, while I was waiting for an MRI a stake member, who has his own challenges, saw me.  He hobbled over to me with his cane, put his hand on my knee and said, "President Vogel, I love you, My family loves you, we pray for you every night" He then picked up his cane and made his way back to his chair.  Even though I have serious challenges, I am very blessed.

JoLynne keeps telling me "We just need the faith of a grain of mustard seed.  If it can move mountains, it can certainly cure this cancer.  So, I have never seen a mustard seed but maybe I should study them closer.  Thank you for all that each of you have done and continue to do for me and my family.  We love you.