This is the Voyager in action. The pediatric version apparently looks a little bit less like a halo. Simon told Vivian before she went to school today, if anyone asks about it tell them it’s a halo and if they ask what that is say it’s space age. Vivian started wearing it Sunday morning. Has not complained once about it. She is amazing. For those who missed the previous post. This in theory will stop the tumor cells from dividing and eventually kill the tumor. She is THE FIRST patient ever to use this with DIPG. It may not actually do anything. But we are praying this is an answer and a cure. It would cure not only DIPG but multiple other pediatric and adult brain tumors as well.
Thank you for all of the prayers and support around the Voyager. We are by no means going to rest on our laurels to see if this is going to work. We are still in the process of trying to get approval from Providence Health Plan for the drug panobinostat. This has shown to at least slow progression of DIPG, where nothing else has. We have already received 2 denials, even with a letter from Dr. Michelle Monje from Stanford who leads the clinical trials for this drug. Simon will give a presentation tomorrow for the board at Providence. Please pray they will make a wise decision and accept coverage for this. We have spent hours upon hours on this. Maybe it is part of God’s plan to keep us busy and distracted. Kind of like January 31, the day before Vivian’s first MRI, she had lice! I spent the entire day doing laundry and hair treatments, left very little time to worry about her MRI the next day.
We have also submitted a request for patient support from the drug company who makes panobinostat. That has been an ongoing ordeal as well. We do not qualify for their patient assistance, but hope if Providence denies us again we could get it at least for a reduced rate. The normal price is $200,000 for her 48 week regiment. We pray at the very least this and the halo might give her more time for a pending cure for DIPG.
Someone asked me to reiterate that all money raised for the foundation is going to research. NOT for Vivian’s care. We are fortunate to be able to cover that ourselves.
Posting this prayer again.
A prayer written by my Mom. I’m praying it often.
Father in heaven we ask again today for the love of your healing hand on Vivian Rose. That you would touch these tentacles of destruction on her brain stem and cause them to recede. We ask that you call them back and cause them to wither in your hand. Drawing back like the ebb of the sea. Cut off the source of this tumor that it would choke and die, that this unruly, unwanted, unacceptable cancerous growth would be stayed by your all powerful hand. Like the fig tree that Jesus cursed, the tumor would be no more….
We pray all these things is Jesus holy and precious name.