Our Fight continues

Our fight continues…

As Dad mentioned in his last post, we received some disheartening news from the Radiation Oncologist that radiation would give him more time, but not as much as we had hoped. Turns out this hitchhiking bastard is aggressive (For others that read my earlier post, I now decline to refer to the dragon as a hitchhiking friend as he has not reciprocated the favor by staying away. From now on, the Bastard it will be, apologies for offending anyone). So the dragon/bastard made his return in August. A little growth, and concern from the Rad. Oncologist that there might be more beneath the surface we just can’t seebecause of the Avastin. For us, time to get another opinion. The Rock stars are smart, but we are ready to try something new and they support us! Fire up big team!

Earlier this year I heard about the Polio virus trial at Duke, and thought maybe it was time for a hail mary (it works some time, if you will remember Seahawks vs. Packers in 2012! Go Hawks!) and given our options, (which we still have options and are to be thankful of this we have been told!) decided to contact the clinical trial team at Duke. After a whirl wind week of faxing, scanning and calling, Duke had all the medical records for Dad and told us to come on down for an evaluation to determine final eligibility for the Polio Trial! And so, we were off to North Carolina, thanks to the loving support of good friends of my Mom who arranged our flights and family who supported our hotel stay (Thank you DeeDee, Soloman, Tia and Thomas, we cannot express our gratitude through words alone)! Off to North Carolina to see about some Polio Virus and injecting it into Dad’s brain. Who would have thought? Cheers to the bastard, let’s hope for some Polio! 

So, let me tell you, the people of North Carolina are so wonderfully nice! We think we are nice here in Seattle, but those people know southern hospitality through and through. After a day of clinical testing and back to back appointments with the clinical team at Duke, they determined that we may be eligible for the Polio and if not for the Polio than a new study called D2C7. Dad passed the Neuro tests with flying colors (spell world backwards on the spot, we did it!) We had a follow up appointment the next day to determine what our options really were. So we left, tired, scared but hopeful that these smart people at Duke might be able to help us. That evening Dad and I found the only Irish Pub in North Carolina (or the only one google and I could find) and sat on a picnic bench on the lawn. We spent the evening doing what we have done for many years, enjoying a meal and talking about life, my babies, our struggles, our blessings and all that we have to be thankful for…Good, strong family and friends, the ability to work and produce great things, and our love for each other and ironically the bastard for the clarity it has provided in many ways. Life AC… Super hard, crazy but still good.

The Neuro Surgeon reviewed Dad’s MRI and the bastard had grown a little close to a ventricle, and there was concern that injecting with the Polio virus could lead to adverse outcomes(you know, brain hemorrhaging, paralysis and the like). But we still had options, radiation back home or a new clinical trial at Duke. The Duke team made the clinical decision that Polio was not the route for us, but we were still a good candidates for the newest trial (only 6 people in it so far) D2C7. At Duke there is hope! And We felt this leaving the hospital in August.

So we flew home, and spent a Sunday dinner with the family. Sitting around my kitchen island, waiting for our beef and noodles to cook, we discussed our options. Option A – Radiation for 3 weeks, risks of deficits like short term memory loss, potential for loss of physical functionality, radiating healthybrain as well as the bastard, unknown return to work status, prognosis maybe 6 months to 12 months, if we were lucky. Option B – D2C7 trial at Duke, risks of brain swelling and similar deficits because of this, and the unknown of a new immunotoxin injected into my Dad’s brain but, and this is a big BUT, Hope. This drug has proven effective breaking down Glioblastoma tumor in very early phases of the trial and follows the similar methodology of the Polio virus trial. Here is the scary truth, Dad will be the 6th or 7th person in the trial. There are risks associated with this procedure, but given our options, we decided as a family this was our best shot at more time. With a terminal diagnosis, my Dad has fought for two things. 

1. More time; time to spend with his grandbabies, time to play guitar, time to work and time to spend with his loved onesteasing and laughing. 

2. Any way to advance the treatment of this horrible cancer or to help his Glioblastoma compadres

So we made the appointments, scheduled the flights and away Mom and Dad went last Thursday back to beautiful North Carolina. Battle ready we were as long as we were cleared medically and the bastard hadn’t grown an additional tumor friend somewhere else (there are a lot of dependencies to be cleared medically for treatment). Thankfully the bastard stayed at bay, only growing a little over the last month, Dad’s blood counts looked healthy and he passed all of his neuro tests again (Dad, remember these words and say them back in order Pear, Nut, Screw! It’s a neuro/glioblastoma joke, but he did remember them!) Fast forward 24 hours when were notified that the insurance company has denied my Dad’s admittance to the hospital. And we thought our biggest concern was surviving the procedure and dealing with the outcomes of that, whatever they may be.

After spending over 8 hours yesterday talking to the insurance company, the insurance plan, the OIC and the US. Department of Labor, trying to understand the reasons for denial of this trial. The reasons I have been given are that this is an investigational study and the treatment is not medically necessary therefore insurance will not cover the hospital facility or professional fees of the treatment… We have appealed the denial (Based on the ACA provision 2709), but I am told we won’t have answers until Monday (although I have been assured an oncologist at the insurance company is now reviewing his case and we may hear back today) but Dad needs to be admitted on Sunday to begin treatment. So now… we wait and hope and pray that someone will understand our situation and approve his treatment. And even though the bastard and our opponents are mounting, we continue to fight for hope and time…….