Thursday, September 17, 2015

I don't have any pictures from the last couple of days, just been
on the road. But, here is a pic from archives of the girls when
they first got to hold Eli. September is childhood cancer month.
It is not rare, and it affects more than the diseased child.

Eli and I were on the road again Wednesday. I did not expect us to be, but late Tuesday  afternoon literally I think it was 4:57, we finally called Houston and asked about doing some kind of temporary treatment while we wait on St Jude to make their decision. So they set him up to get one treatment on Thursday. I was already going to fly to Houston Wednesday so that I could get the furniture turned in, and do the walk through to close out the apartment. I was going to fly to make the trip very quick, but now that Eli is going and we need to have the car. He and I left when we dropped the other kids off at school. So we had to drive the entire way Wednesday. We thought we would then turn around and come home, or start the trip home Thursday evening. We were hoping by next week that st jude will know what they want to do. 

But, here on Thursday night, Eli and I are not on the road - for once. Today, didn’t go as we expected, so we are still in Houston. We did wrap up the apartment, and get out of it today, so we said goodbye to Pearland, Texas. But, MDA wasn’t quite prepared, or in agreement among the team members, that it would continue the previous treatment of the trial at the dose that Eli received at Memorial-Hermann. Results of the trial are not “published”, because it is still active/open, so there was some pushback that MDA could only do the treatment for which it has results (the pilot of the same treatment at the lower dose), which is half the dose that Eli received. So, they needed more time to make that decision - if they would do the dose he received or the dose they have done. In addition, what good would one dose do, especially at half of what he got (nothing, I already know. Three months of it barely did anything, if it did anything), so if we start it, we really needed to be prepared to continue it - as of right now, MDA is the only place willing to do some form of it. Although we have not received official word, we are pretty sure the St. Jude affiliate in Huntsville will not do the treatment. We are still waiting to hear if Memphis would do the treatment, but I don’t have a lot of confidence as long as it is taking to hear from them. We want to try UAB, but Eli has never been a patient there, so Dr. Zaky thinks it would be difficult to convince them to do the treatment. So, it seems that it’s not as easy as we were lead to believe it would be to continue the treatment, and our only choice to continuing the treatment is shaping up to be at MDA (which means we would be here until it stops working, and I’m pretty sure that would be soon). But, they are not ready to do it. So, Dr. Zaky is suggesting we do an intrathecal (sedated, into the spine) procedure tomorrow of the same medicine. Eli has done that before, back when we were in the NOAH trial waiting on the blood work to come back. It was pretty rough on him, (fever, leg pain, immune system and blood cell count drop) so Dr. Zaky is cutting it by one-third. He put him on something to protect him from inflammation in his spine, and to hopefully protect his counts. So, with Eli being sedated tomorrow, and getting a lumbar puncture (he really needs to lay down most of the day after that), I’m considering staying put a couple of days. Dr. Zaky wanted us to go home, but was very adamant that we be near an emergency room. Well, I won’t be near an emergency room until I get home, 13 hours after I leave, except intermittently as I might pass through a city. So, his concern for our access and me remembering how hard of a time Eli had last time, really makes me want to stay put for a couple of days, although I had just gotten use to being at home and basking in the trips to school to drop off and pick up the kids.

So, that is the explanation of why we are not on the road headed home. And, Dr. Zaky plainly said that this is just to bridge us until Sloan-Kettering in New York will see us. That is really what he wants us to do, is get there for the anti-body treatment. So, it looks like continuing this treatment as it was in the trial really does not seem to be an interest or concern for anyone for him. Whether we do methotrexate intrathecal or via the Ommaya, doesn’t seem to matter b/c it is very temporary and neither one do very much. At least with the Ommaya, he doesn’t have to be sedated, and we didn’t have the side affects of the other. But, Zaky said that this intrathecal will basically (my words) stunt it for two weeks maybe, by then, we need to know what the next plan is. He wants to look into the Kentucky immunotherapy trial, but we were already turned away from that one, and I just learned today that the first kid on the trial has progression. He is not really a kid, I think he is 19, or 20. Please, say a special prayer for Zach, and for his mom Nancy. We certainly can relate to being dropped from a trial that was so hopeful. It is truly devastating.

Eli is feeling good, he looks good. He is having some kidney issues, though, that Dr. Zaky is concerned about. But, he does look so good, and strong (considering. Of course, he has issues and the last scans, for the first time, showed a shrinkage in gray matter, indicating a cognitive decline, which is due to destruction from the radiation of the first treatment). It is heart-breaking to think how ravenous the cancer is going to be to take him from this point through the valley. But, we have been so blessed with the protection of our Creator thus far, so I can’t imagine that will change.

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