Monday, November 16, 2015
That is why we were here today, to sign those papers to start oral etoposide. After talking with the doctor, we decided to go with intravenous etoposide, which is three infusions over three days for one cycle. A lot of boring reasons as to why we chose this over the oral, but the main point for the
So, Eli will once again be among the pioneers of childhood cancer research - the lab rats - as part of the Pediatric Brain Tumor Consortium phase one trial of pomalidomide, an immunotherapy drug that may interfere with tumor growth and may stimulate the natural immune system to kill cells. We only know what it “may” do as far as the cancer, and as far as side affects. From what I understand he is the only medullo from St. Jude in the trial, but it is a consortium trial, so we can’t know what patients the other hospitals have enrolled. I’m hoping that through our social media we can figure out if there are more medullo. I think the most frightening side affect is the swelling at the disease sites. In a sister trial with a similar drug used in DIPG patients, the swelling was enough that it shortened their lives more than if they had done nothing. The trial was stopped, obviously, and DIPG will be an exclusion. Yep, it will re-open because there is nothing and they keep trying. That is the kind of ball game we are in now. Death is not a deterrent, but a side affect. So, these are the decisions that we face. If you want to shake some worry over decisions you face each day, I think I can help.
So, some extra prayers this week as we begin. I saw something this week that said sometimes the only step forward is a leap of faith. So, we are moving forward with a leap of faith. And, it looks like we will be here two weeks, instead of three more days. We are hoping that the doctor will let us go to the car show Saturday in Florence, Alabama, which is about three hours away, but we will just have to see how Eli is doing at the end of the week. I really don’t know what to expect. A friend that takes classes at the Memphis Harding University campus is bringing us some things from home tomorrow, so I will have an another t-shirt to choose from, and Eli will have some more movies.
Please, add a little one named Townes from Mississippi to your prayer list. He is not quite two years old, and we met them Friday as we both waited for Doctor Robinson. He was precious. They were after us, and I saw later that they learned at that appointment he had relapsed while on treatment. This young mother is rightly terrified. They have some options still open to them, so pray that they are able to route the right path to complete healing for this little guy.