Tuesday, April 14, 2015

Eli before surgery with a postser from his church class.
Eli has the flu. I knew it, just knew it. As soon as I figured out that what I was feeling was not normal allergy, whimpy-flying stamina, I could only go to a chair in the room. I wore a mask that first couple of days of fever, thought surely I was better, no, went to the doctor. Asked my doctor if she thought that I might have the flu, and she said no. I am very diligent, obsessively diligent about my hands, so it had to be airborne. We called them Sunday to let them know that I was sick and that Eli was not himself. Vic told multiple people before surgery Monday that I was sick and that Eli was not himself Sunday, and they wanted to proceed. They are giving him tamiflu, but I’m sure it is too late for that. Maybe he won’t have it as bad as I did. I sent his doctor a message. Dr. Zaky seems very nice, and so far, everybody has been very careful to cross the “t’s” and dot the “i’s” and then double-check the crossing and the dotting.
Eli is wearing leg "massagers" to avoid blood clots.
Other than that most recent, distressful news, Eli is doing well as far as the surgery. He has been up, walking some. He has been playing video games, and I can hear him fussing in the background when I talk to Vic on the phone. I am still coughing quite a bit, although I have not had a fever today and am up (fussing in the background when I talk to Vic). As long as I am coughing, I am not sure they will let me go up there.

Ok, moving on…. So, Eli had his cells harvested Friday as you know. We were told it would take four weeks to “cook” the cells - my terminology. So, the concern has always been what the cancer is doing while the cells cook. Well, it’s growing, no doubt. This is an aggressive cancer, respecter of no cutting-edge treatment protocol schedule. It seemed to be growing slowly comparing his two last MRI’s, but Dr. Zaky said it is not unusual for the cancer to take a jump in growth rate after having been off chemo for a while. We had discussed a chemo in the interim, but the window is too small for chemo to help much. So, they decided to take a chance and do nothing. Well, what we didn’t know was that there will be an MRI again before his first treatment to get a baseline. It is possible that the disease could progress so much at that point, that he will be booted from the protocol - he will be a lost cause. We did not know this, and of course, that is just disheartening news. So, number one, pray that Eli’s cancer is a slow-grower. The good news is that we learned that his cells will be ready much earlier than expected. I’m taking it as good news, although my mind wants to wonder why suddenly they are ready early. Did the lab just not have the workload it thought it did, or did they decide to pull them before they were maxed out trying to get them to him quickly. Without a decade of specialized higher medical education, I have to trust that the lab guys know what they are doing. So, we are taking it as good news that Eli will have his baseline MRI April 24th, and have his first injection of natural killer cells April 27th.
My view from my room today.
Elis car show is on for Saturday, and I plan to be home Friday to see the kids and to prepare for the show. I am so excited about how it is pulling together. So many months of several people working on things to make this happen and to make it great. It is going to grow into a beautiful representation of what our community has done to support Eli, and be an event everyone can be proud of. We have many volunteer spots for the day, so we would love to have you involved with it, and of course, bring the whole family to enjoy the day. Yes…. I know the rain forecast, that will really be devastating because we are counting on the registrations from the car entrants, but we are just going to pray that it stay away until the evening. Thank you all for your prayer efforts, and I have so much enjoyed seeing all the comments and pictures of kids, all thinking about and praying for Eli. My feed has just been covered up with Eli, so thank you for that. Here is Eli before surgery with a poster from his church class (already have used one of the CFA gift cards). Then Eli after surgery, they placed these neat leg massage things on him to prevent blood clots since he wasn't walking that day, but he has since. Lastly, my view from my room today.

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