Wednesday, October 29, 2014

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.

8 comments:

  1. We sure love reading your blog! They are so very inspiring! You are constantly in our prayers! Hang in there! We love you P and R

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    1. l love you Roma. Thank you for your words of encouragement

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  2. God bless you, Eric. I hope the Texas treatment works. Thanks for keeping us posted. I appreciate your enduring sense of humor. It is certainly exemplary.

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  3. You have perfect faith in my book. Love you Erico
    Kelly

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  4. I'm with Aunt Kelly. You have the most perfect faith I've ever seen. I love you all. - Candace

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    1. Candace, you are always so sweet. I can't go too far wrong when I have a niece like you.

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  5. Tbank you Roger. I had another great call from Texas today. They are already talking to the HER2 people and setting things up so I can mover right to that trial if the GD2 doesn't do it. We had wondered why, if it is working, they don't just keep adding more T cells as the other ones get tired. Dr. Wang, said that is exactly what they would do. Basically if it is working then I will just keep signing up for the trial over and over and they will keep giving me large doses as long as it works. All great news to us.

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  6. Thank you Kelly. You overestimate my faith but I am trying. It's easier when I am not hurting

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