Simply Love

First of all, I can't thank you all enough for the kind words, thoughts, and insight. I seriously took each word to heart and did a lot of thinking and praying. Of course, there is no way to put a price tag on someone's life and deep down in my heart I knew the right decision. Cody was eager and enthusiastic.  And yesterday I wanted so badly to stand behind him and be just as enthusiastic. But I'm also a mom. And as a mom, I have to think realistically. I wish this could all come together magically, but I want things to remain as "normal" as possible for those three kids, whose lives are turned upside down and inside out. Plus, we are half way across the country from here. Cody likes to do, and I like to plan. Having to surrender it all has been a big struggle for me. I can't begin to describe the support we have from family and friends, that I know are going to help pull this all together. And although I don't have the plan completely sketched up, I know I have to have the faith that it will come together. So thank you.  Huge hugs to all of you!

This morning we got a chance to visit with the research team again and Cody gave his signed consent to be a part of the trial.

Phase II Study of Pembrolizumab (MK-3475) with and without Bevacizumab for 

Recurrent Glioblastoma 

There are only three other locations in the United States that are offering this trial, however Duke has recruited the most, with 12 active people currently in the trial. They are allowed up to 15 people to participate. This is an amazing blessing that Cody is a candidate for this trial. 

The study drug, Pembrolizumab, has been FDA approved to treat a couple other types of cancers, and has been successful. They do not know yet if this is going to be a successful treatment for brain cancer, hence the trial. What they do know, is that their 12 active participants are doing well.

Cody did lab work and a urine analysis at the appointment this morning, in order to be submitted for randomization. We will not know which cohort he will be a part of until Tuesday. 

Cohort A:  study drug, pembrolizumab (MK-3474) + bevacizumab (Avastin)

Cohort B:  study drug, pembrolizumab (MK-3474) only

Knowing what cohort he will be in will determine how often we will need to travel here. If he is in B, then it would only be one time every three weeks. But if he is in A, it would be more frequently.  When we do come, it would only be for a day, unless there are problems. There are no restrictions on flying for Cody.

Both drugs are in liquid form that would be given through an infusion. MRI's would be done every six weeks. One of the biggest risks with these drugs is brain swelling. They described it to us like this---if you get a sliver in your finger, it might get red and inflamed because the body's own immune system has detected a foreign object. Well that's exactly what is going to start happening to codys brain when the body starts detecting the cancer cells. They have a huge job watching this closely and using other medications to help keep the brain swelling down. 

They also described the body and the cancer cells being knocked down. Think of your body like a balloon. The drugs are going to knock Cody's body down, but just like a balloon, it will bounce back and recover. They describe the cancer cells as a Lego tower. Once these drugs knock them down, they are down for good. Look out cancer cells, we're coming for ya!!

They have Cody's first treatment scheduled already for Wednesday. An MRI has to be completed within two weeks of starting the trial. This will be two weeks on the dot. Otherwise they have to fight with insurance to get them to cover another scan, and often if it's to determine eligibility for a clinical trial insurance doesn't cover it. We snuck right in!

Originally our plan was to fly home tomorrow. But rather than coming home and having to be back right away,  we are going to make the 4 hour trip to Arlington VA, and stay with Cody's sister for a few days and travel back to Duke on Tuesday.

We both are very excited to get something going! When I sit back and think about it, our decisions have been easy to make and God has guided our path. How else would two people from small town Midwest, make it out to be 1 of 13 people on a study at one of the worlds largest and most successful centers offering brain cancer treatment and research programs?