a great phone call

As I think I mentioned, we have begun a new drug called PD1.  Our insurance denied payment because it is currently only approved for melanoma.   The testing for Osteosarcoma began this week but it will be months before that data is available.  We don't have that long to wait so we decided to pay it on our own.  Our doctor submitted a request to the drug company asking if they could give me some kind of better price since I was paying myself and insurance wasn't helping.  The drug company turned down our  request.  We were just planning on paying $8000 every other week and somehow finding the money.  It would have added up.  I think that treatment would have consisted of at least 6 injections at $8000 each.  It might have even been more.

So, today, I came home and was just sitting down for lunch when a phone call came in asking for me by name.  The lady on the phone said she was calling from Brystyl Meyers.    She said "We have decided as a company to provide all of your drug at no cost to you.  It will be shipped directly to your doctor"

Well that started me crying.  She asked if I was okay  I told I was just so grateful.  " i have been through so much.  What you are doing means so much to me"  She just said "We re glad we can help you"  Every time I turn round I see another miracle from God

I'm leaving on a jet plane

leaving on a jet plane

Tomorrow we will finally be headed back to Utah.   It feels like we have been gone so long.  Both JoLynne and I will be so grateful to be home.  We don't know how long we will be there.  That should be known in the next few days.  The immunotherapy team in Houston is reviewing the pathology done here in Miami and comparing what they did in Houston to try and decide our next step.  The surgeons here are adamant that we proceed towards treatment as soon as possible so my guess is that our stay in Utah won't be near as long as we would like.

Yesterday I had my weekly doctors visit.  They wanted to see a post surgical CT scan of the area so we went over to radiology.  The nurse was a funny lady, kind of a little off.  As she was taking me back JoLynne whispered to me, "Speak up if she messes up."  Anyway, on the way back she commented on how white the skin was on the side of my face.  I told her is was a graft.  She said, "Where did they get such white skin?  Was it from your butt?"  That still makes me laugh thinking about it.  I told her it was from my leg. I had to show her the scar to prove it.

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.

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.