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.

Recovery

Well, it has been three weeks now since the end of treatment.  The doctors had told me to expect an increase of pain beginning about a week after treatment.  They were right.  The mouth sores were pretty spectacular.   Those began about one week post treatment.  Taste buds were gone, of course and pain with eating became pretty intense.  Basically my daily routine is to take tylenol and Ibuprophen every 6 hours and then at meal time to rinse with a viscous lidocaine solution and then a second topical anesthetic that is even stronger and then eat quick before the anesthetic wears off.  Oh, and I drink an "Ensure Plus" every meal to try and hold onto my weight.    After that I run to the sink and try to brush and floss and then spit blood for the next few minutes.  Then I rinse with anesthetic again.  Even doing all of that I lost about 18 pounds.   Frankly eating is no fun anymore.  After about two weeks my doctors here determined that I had a herpes infection on top of the mouth sores so they started me on Acyclover and that helped.  I was showing some improvement and then started getting worse again.  Another visit to the doctor revealed a sinus infection had come up.  I started some amoxicillin about two days ago and now I am seriously feeling better.  This morning I woke up and thought, "wow, I don't hardly hurt".  I haven't eaten breakfast yet but still, that is serious improvement.

My doctor from Mayo has been so nice.  He has emailed me multiple times checking on me and suggesting what I should do.  I couldn't ask for a more kind, caring doctor than Dr. Foote.  So, I think I can see the light at the end of the tunnel.  I have been so tired lately too.  I'm hoping that in the next few days that begins to grow less as well.

As always, I am so grateful for the prayers and faith of others in my behalf.  Thank you!  Four weeks ago we were told that there was no hope for my survival.  Today I am just dealing with a sore mouth.  That is a big step forward in my book.  Truly a miracle.  Thank you for helping that miracle happen for us.

By the way, here is a picture of the bird back in Minnesota that kept swooping down and grabbing my hair every morning when JoLynne and I were walking.  That was really weird.  I have cut my curls off now.  You just can't walk around with your hair looking like nesting material, it's just too dangerous.

We love the temple!

We had the opportunity to go to the temple this evening.  Our son Jarom came along with us.  It is always so nice to be in the temple, especially with family.  It feels like coming home.  This trip had a special purpose, to try and get an answer about what we should do with chemotherapy.  One of the sweet things about the temple is that I seem to be able to get answers to my prayers more readily there.  This trip was no exception.  After careful thought and prayer both JoLynne and I received an answer, in the temple, that it is time for me to stop chemotherapy.

I have always found it more difficult to get answers to prayers when the matter I am praying about has such profound personal emotions associated with it.  It is hard for me sometimes to separate my personal feelings from answers from God.  The answer that we received in the temple yesterday was unmistakeable.  We are all relieved that I can begin to move on and regain my strength.  Already, on last Thursday my immune system and my red blood cells had begun to rebound somewhat according to the doctor.  My body seems to be coming back to life again.  I feel like I am waking up from a dream.  I still don't have the strength that I had prior to chemotherapy but I feel so much better than a week or two ago that the contrast is amazing.  I am so grateful to feel good again!

I have learned so much these last three months.  Perhaps in another post I will talk about that.  It's a little close to home still to talk about.  One effect of all this has been on my tear glands.  They just seem to work a lot more often than they used to.  Maybe my heart is softer or maybe I am just getting old and leaky.  I look at my wife and my children, I think about the many miracles that have occurred and my heart is full.   I am just so grateful to be alive!

The Provo temple.  Where JoLynne and I were married.   It continues to be a special place for us

Initial Diagnosis

As most of you know, Eric was diagnosed with a sarcoma in his temporomandibular joint (TMJ) on Friday. The tumor is about the size of a raquetball (4-5 cm in diameter) and is growing inward which will make the removal very difficult. We do not know what type of sarcoma the tumor is yet. The initial diagnosis is either an osteosarcoma, Ewing sarcoma, or a high-grade chondrosarcoma. There is also a possibility that the tumor is an agressive benign tumor.

Sarcomas are a very rare form of cancer- especially in this location. They are generally found found in a limb or in the pelvis. Because of the type and location of the cancer, there are probably no doctors in Utah qualified to treat this cancer. We are looking into treatment at a sarcoma center somewhere else in the US. Right now we are trying to the right location and team of doctors to treat this difficult type of cancer. We appreciate your prayers in helping us find the right place to have this treated.

As you can imagine, this has been a very difficult time for our family. There is still a great deal of uncertainty and anxiety over this diagnosis. But we know that Heavenly Father loves and cares about us. We know that he is aware of our situation and will bless us. We have great faith that Eric will survive this cancer.

We appreciate all of the love and support we have received from all of you. Please keep Eric in your prayers.

We will be updating this blog regularly to keep all of you informed as we this go through this process.

-The Vogels