Showing posts with label pneumonia. Show all posts
Showing posts with label pneumonia. Show all posts

Sunday, December 28, 2014

You just never know....

They talk about the best laid plans of mice and men.  Well, I don't know how well mice plan but the plans of this man at least are sometimes uncertain.

I had been doing so well lately.  My energy was improving, I have a little peach fuzz hair coming back on my head, my pain levels had increased but I was dealing with it.  Christmas was wonderful.  We got to talk to our two missionary sons, one in Spain and one in Chile.  What a joy to see their smiling faces and hear their laughter again.  My daughter had come from Oregon with her husband and our darling granddaughter.  Our son had come home from Boston.  Life was great!  Then suddenly I began to feel pretty wiped out.  I noticed the beginnings of a fever.  I decided to lay down for a nap but by the time I woke up I felt worse rather than better.  My temperature kept increasing which meant, another trip to the emergency room.  I just love that place.

So, on Christmas afternoon around 3:00 we took off for the emergency room again.  I was not feeling my greatest.  I guess it must have shown since they moved me to the head of the line.  Or, maybe I just get priority treatment for all the frequent flyer miles I have there.  Who knows.  Anyway they got me back pretty quick.  My fever was high enough that it didn't take them long to decide that I would have to stay in the hospital.  They wheeled me up to the 7th floor.  The charge nurse came out to meet us and said "Haven't you been here before?"  It's not a good thing when the nurses begin to recognize you at the hospital.

Snow Goon

So, I spent the next four days in the hospital.  The doctors finally decided I had pneumonia, an infection in my facial wound, and strep throat.   All at the same time!   Oh, and a yeast infection too.

Well, after four days in the hospital I am doing better  but the doctors in Houston tell me that I need to wait a week and become infection free before they can start treatment so I guess my treatment will be bumped back a week.  Not what I wanted but I guess it will have to do.

On a happier note, it has been heavenly having my daughter and son in law here with our sweet granddaughter.  She really wanted to make a snowman which we did.  She has kind of demented uncles (influenced by reading so many Calvin and Hobbs books)  so it ended up being a snow goon.  I hope she isn't damaged for life.  It has also been wonderful to have our son here on break from medical school.  He is a great young man.  We love having him around.

I guess we have a week to burn now.  Maybe we will use some of the time to investigate reconstructive options for my face.  Maybe the snowman could use some work as well.

In the meantime, thank you for all your prayers in my behalf.

Saturday, October 18, 2014

"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.