Blogs are basically stupid

My apologies to all who are trying to respond to this damn blog. It is a giant pain. You have to sign in with an email address and then type the letters from the squiggly box, and really, it is just a bunch of annoyance if all you want to say is "go you". I totally get that. Never fear. I know you are out there, and I also know that you all know our email addresses and phone numbers. So, if you want to say something, you can. Otherwise, I am hoping that this is an expedient way for folks to stay tuned and not feel that weird uncomfortable thing of not knowing what is happening and not wanting to intrude.

Here's the update: I know nothing. I contacted UPenn on Monday and then was told that something was wrong on our end. I read the email as something wrong with our insurance but, frankly, IU Health is not only our insurance, it is also Chris's medical provider and my employer. Plenty of room for misunderstandings and even worse.

Because I am "highly motivated to move this project forward", I pushed whomever and whatever I could think of as leverage points last week and I think things may be moving forward (see the Boomer post). Also, I may have alarmed some people. Not sure exactly, but I have had some worried/defensive looks directed my way.

Chris is showing predictable signs of the ALL doing what it does, mainly through plummeting platelets and stamina. This is difficult, but we have been here several times before and believe his doctor will manage these well.

My understanding is that he can be "tuned up" through various chemos and transfusions to get him to UPenn to see if he is eligible for the study. (It is truly stunning to think of such interventions as merely tuning up but that is the world we are living in right now.)

Here is the goal: if Chris gets to UPenn and is accepted, the CART-19 protocol takes T-cells from him, re-engineers them into cancer cell killers, and puts them back into him. This has 80% or more success rate for second remission. If we get second remission, it is possible to try for bone marrow (stem cell) transplant. Only that will provide an avenue to cure. Second remissions by themselves don't work.

This is just my side of the story. Most of you all are friends with Chris on the Facebook. He checks in often and is happy with contact.