Tuesday, October 27, 2015

We have not gone to Memphis yet. Still waiting for the trial to be turned back on, which is very frustrating as the cancer, of course, grows. I suppose if we don’t hear from them by tomorrow, we may head back to Houston for another intrathecal dose of methotrexate. Caleb and I have been sick, he had strep throat, but I think we caught mine before it got started, so we are both much better. Eli is having a little episode with his side hurting, so I took him in to our local clinic (hallelujah for affiliates!) and had blood work done. But, he was all normal, even did an ultrasound of his organs in the area of complaint. It has been a couple of weeks since we’ve had that done, because I kept thinking that we would be going back to Memphis to start the trial. I think he was dehydrated. And, mommy confession, I accidentally let him eat/drink some mold. I know, weird, but had juiced for him, and he doesn’t like it, or won’t drink it without prompting, so I just kept putting the thermos (that has a straw) in and out of the fridge till it was gone. I added “fresher” juice (same batch defrosted) on top of what was there to fill it up and keep the train rolling, and didn’t think about how old the original was. So, he drank a little, and when I did go to wash the cup and start over, it had considerable amount of mold on the straw (concealed inside the thermos). I felt terrible about it, but after talking with a nurse and pediatrician, sounds like that shouldn’t be a big deal. Anyway, I think it is coincidence with this side hurting thing again, and he was dehydrated from our stand-off about the juice (trying to get something healthy in him), and it enough to freak me out. So, just a day in the life of….

We are enjoying being distracted by the thought of Eli getting a Mustang. We hope the camper and truck sell this week, so that we can get the search on to find his Mustang. It’s out there waiting on him! Everyone has been overly generous joining in, many finding ways around my $10 cap, but it’s all in good fun and how special it will be with you all being a part of it. The Flat Rock plant is looking to see what they’ve got up there; we’ve got Mustang club people all over the country looking, so we have a lot of experts in all things Mustang to help us find the right one for him. I will leave the gofundme up until we sell the truck and camper.

It is expected to be rainy all week, but we are looking forward to Halloween activities. Eli loves Halloween, so we are so happy to be enjoying that with him, and that he should be able to participate.

Please, add Drew to your prayers. He has developed blood clots in his lungs, which is causing problems getting an MRI to check the status of his disease in order to know if his treatment should be continued. And, continue to pray for treatment research, and cause research. I am not a conspiracy theorist with the “cancer industry”. I don’t think the cure is being withheld from anybody (if someone, some company had the cure, they or it would be multi-times richer than they are by withholding it, and be remembered in the history of the world as a savior. And, there are too many people across the globe involved in research to be kept quiet. There would be a whistleblower to get through the cracks, who at least would want to go down in history as a whistleblower. That’s not to say that pharmaceuticals isn’t a money bloated industry, and takes advantage of the situation. And, that’s not to say that there aren’t some areas that get pushed to the side in research because of funding and government regulations or lack of, i.e. natural chemical combinations, but still I just have never seen sufficient, credible proof that the cure is being hidden or suppressed.). But, parents of relapse kids face such an emotional struggle from so many directions, the stress of knowing too much, and new parents face the stress of ignorance and awakening to the situation they are in. But something that - to me who knows nothing - should be an easy fix is the lack of communication between hospitals and doctors in our country, and around the world, and the speed at which poor prognoses patients are handled. The medical profession at this level during this time in our history should be so open and communicable that it would be like having one big virtual hospital for everyone fighting disease. I just get frustrated when I see parents that I think are being taken advantage of by an ego that just wants a notch in his or her stethoscope, instead of helping that patient find the best treatment wherever it is. Anyway, I don’t have a cape, so I’ll just rant.

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