Friday, April 25, 2014

After sedation recovery. He likes for them to wrap him up
and to ride in the wheelchair while he wakes up. It was
beautiful outside, so we sat outside a while.
Eli’s MRI today showed that the lesions on the brain are stable, and his spine is clear. That is still considered going in a positive direction, although to read the actual report, it is hard for us to get that out of it. But, we are not doctors. It’s only been four months since we started, so Dr. Robinson said that comparing that MRI to this MRI he still has impressive results. Another doctor came with the results, and he said that the cancer is so aggressive that if it wasn’t working, the lesions would be growing, not stable. Even in a week’s time, there can be measurable growth. So, the fact that they are stable means that the cancer is still reacting. Stabilization is considered a reaction. So, we will take it. It may be the beginning of the tide turning, but it may not be. The first doc said that sometimes the difference is not that drastic and the lesions are so tiny at this point to measure. And, they did decide to start him on pantamodine in lieu of the septra due to the drop in ANC that caused him to get lower doses of chemo. I really didn’t think
Sedation prep for MRI.
 the NP was listening to my reasoning, she rarely listens to anything outside of the norm or the way the do things. She is very cookie-cutter, but, I will also say that she has never forgotten anything we talk about in a check up (like to order meds, or reschedule an appointment, etc.). She does not take notes, either. And, she always emails us back, and returns calls, but if you have a question about treatment or why we do this or that and can we change, I’ve got to email the doc. He has also been good to respond. Today, he was a little different. First, it was another doc that I’ve never met came in with the results. I was terrified and almost burst into tears when he came in and introduced himself. My heart was pounding and I was almost breathless as he asked very vague questions about how Eli was doing. My first thought was that he was a Hospice doctor, or that we were being handed off to a doc in training since we are not connected to research. I guess he was
 in training, but he had the results, and he was the one that listened to me about the pantamodine and thought it was a reasonable assumption about the ANC drop. He said he would talk to Dr. Robinson. So, when Robinson came in he said that it was fine to switch him and hopefully keep him getting the full doses of chemo. So, he got pantaomdine today. He did not offer to look at the scans, and didn’t offer to talk to Vic on speaker phone, which he usually does. He is very nice, but I think when it comes down to the brass tacks, he wants to talk to Vic. I think he can sense the intellectual gap between us, and figures whatever I don't’ get, Vic can explain it to me on our own time. But, I suspect at this point, we are pretty low priority because we are not part of any research - and this is a research hospital. So, it is going to be interesting as we go along. Eli recovered from sedation for the MRI just fine. He is getting chemo now, and I am hopeful that we will not have the excruciating cramping during the night that he had last time. I am pushing his fluids much more, and was able to push him after the MRI yesterday. I am hopeful that, that was the problem last time because it is easily remedied. We also got to see the therapy dogs yesterday. Eli petted them this time, he usually won’t. Then we just watched SpongeBob and played video games for the evening.
Chemo should wrap up about 3:30, then we will head home. Unless he has a bad night, we are headed to Birmingham tomorrow for a race at Barber Motor speedway featuring Mustangs. I have been trying, since I think last summer, maybe, to put together a slide show of Eli's first treatment (not knowing that it would be obsolete!), so I really wanted to finish it. It is not as great as I had hoped, just because I am not using a great slideshow app, and I don't have time or brain power to learn one, plus I know nothing about music, so that has been a major hang-up. But, I tried to post it on You Tube, so hopefully you can see it. It is 16 minutes long, so know that up front. View it here. Thank you for all the prayers. It has been so comforting these last few days to watch the posts coming in and to read your precious thoughts.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.