Jul 10, 2011 - 3:29 am
We've had a really horrible week. David had two seizures--we suspect grand mals but they happened when he was alone (sleeping both times) so we don't know for sure how bad they were. He had one on Saturday, 7/2, and another one on Thursday, 7/7. Both times he bit a large chunk out of his tongue and it's really painful. After the second one on Thursday, our NO told David to go to the ER. He went in and they did an MRI which showed "disease progression." Translation: tumor growth. There's a significant amount of contrast showing in the original location and also a small spot on the other side of David's brain.
We are devastated. It was shocking to see the last MRI taken only 3 months ago, side by side with the new one taken on Thursday. The was a big difference. We are very, very frightened.
We met with the NO and part of his team on Friday. We are done with Temodar. Our NO said that it is no longer effective. David will go to OHSU (Oregon Health Sciences University) on Tuesday for a 2 hour scan to rule out radiation necrosis. Our NO is sure that it is not radiation necrosis, but he wants to confirm it. Also this 2 hour scan will show the exact location of the blood vessels and that will help with pinpointing the delivery method for the new chemo that David is going to start taking.
On Wed. we will go back to OHSU and have a comparison scan done, along with xrays, bloodwork, and some other tests. They will admit David into the hospital on Wednesday. On Thursday, David will go under general anesthesia and they will put a port in his chest and run a catheter into his femoral artery. I'm a little sketchy on the next part, but I believe they will put mannitol into his femoral artery, which is the agent that causes the disruption in the blood brain barrier. Then they will put 3 different chemos into his port. The dr. said that they will be in and out...I believe it takes about ten minutes to deliver the mannitol and the chemos. Then while David is still under anesthesia (the kind where you are awake and conscious but you don't remember anything) they will give him a drug that will prevent hearing loss caused by the chemo. This will save his hearing but will make him violently nauseous and vomit for 10 to 15 minutes. Then he will go back to his room for the night. The next day--Friday--it will be the same thing all over again, but on the other side of his body to target the other half of his brain. David will have a steroid shot to help close the blood brain barrier, then a shot of a human growth hormone to help with his white blood cell count. Then he may or may not have an infusion of platelets. That will depend on how he handles the chemo. Hopefully he will get to go home on Saturday. Saturday is his 28th birthday.....
This treatment is a clinical trial called the Blood Brain Barrier program. Our NO has been working on this for 25 years. He said that he thinks it will help David. He said that David is young, in good health, with no deficits, and that is all a big positive in his favor. He also said that it might not work either. There's no guarantee....but then he said that he thinks it will work. That's pretty huge to us because he's not much of an optimist. We will repeat this chemo treatment protocol every four weeks for a year. Funny how a year sounds like forever when you are talking about chemo treatments but sounds like nothing when you are talking about life expectancy...
Our NO also said that we are not talking about a cure here....I cut in and said that we know that....that our goal has always been "management and containment" with the hope that something new will be discovered that will help even more, or maybe even a cure will be found. And I said that we are praying for a miracle. He said that we all want a miracle. I didn't want to be rude so I didn't say what I was thinking....he may want miracles...but we BELIEVE in miracles. Big difference. I don't know what will happen with David, and I am scared, sick, and broken hearted...but now is not the time to stop trusting in God. So we are digging in for the battle ahead and we are praying hard, loving hard, and holding on to hope hard.
Please remember David in your prayers. He is very strong and brave and positive but this really has been devastating to him. I love him so very much and I would gladly give up my life for him to be well and healthy. But life doesn't work that way....
Love and blessings,