Dec 21, 2011 - 3:32 am
I started typing a description of David's situation and I just can't do it. It would make too many people on here feel horrible. I will say that there has been some improvement. We get to go home tomorrow. David will be living with me and my husband (his dad) and David will get tender loving care and anything he needs. We will be taking him to outpatient rehab and I will be working with him at home. He needs 24/7 care at this point.
The doctors say he will recover from this. I don't know if I believe them. They also said he is off the BBBD protocol. They didn't have to tell me that. We would never allow another treatment after what this one did to David. I think the treatment came close to killing him. If you could see him, you would agree. They said that another surgery is not an option--it would be "catastrophic" and we'd never find a surgeon who would agree to operate on him. Radiation is out of the question. There aren't any more effective chemos to try. They are considering doing just IV chemo, or IA (intra-arterial) chemo, which David did the beginning of Oct., and he had a favorable response. IA delivers the chemo with 10x the power. The BBD delivers it with 100x the power. The BBBD was too much for David. IA uses the same three chemos as the BBBD protocol...carboplatin, etoposide, and methalan. But no mannitol for the blood brain barrier disruption. They said that looking at his earlier MRIs, his tumors were advancing and will involve "eloquent" areas at some point in time. The last MRI did not show the large amount growth that the previous MRIs did,though, so that is good.
They are considering adding Avastin. Here's what they tell me about Avastin. But before I say what they told me....I need to preface this with some information. Not all doctors agree about Avastin. I don't want anyone on this site to think that what they are telling me about Avastin is set in stone. NIH did NOT agree with OHSU's opinion of Avastin, and they thought David should have been on Avastin a while ago. NIH said many times, and I quote, "David deserves to be on Avastin. It is a good, FDA-approved drug and it has shown good, durable results." When I talked to Dr. N's head nurse (the non-dog one), she said that when they gave Avastin to lab rats, their symptoms improved but at autopsy, their tumors had grown huge. She said that Avastin only treated the symptoms. They feel that Avastin is a fancy steroid. They said that patients feel better at first because it is relieving symptoms, but that Avastin does not kill cancer cells. So....I asked why do Avastin? I said I thought they (the OHSU team) considered Avastin an end of the line drug, and they said, yes, they do. Fills me with so much sadness for David.....
They said the way Avastin works is to prevent angiogenesis...the formation of the blood vessels that feed the tumor. The blood vessels stop reaching out to the tumor to feed it. But the tumor then starts to grow towards the blood vessels. That's why the tumors in the lab rats were so big. So they give the 3 chemos to kill, or at least stop, the tumor from growing to the blood supply. But in time, they said that the tumor will find a way around the chemo. They don't know how long it will take. And they don't even know for sure if Avastin and the 3 chemos will work for David. It may not work at all. They said there are no markers or genetic indicators for prediction. My heart is so heavy and I don't have much hope. If it did work, it might give David another two years. But things don't seem to be working very well for him these days.
David's current issues are from his brain swelling from the disruption. He has a lot of edema. For a while there, they thought he had a stroke, but an MRI and a CAT scan ruled that out. They said that he has a lot of tumor and he does not have any space to tolerate any swelling whatsoever. They have him on a high dose of steroids to reduce the swelling but it will take some time.
So that is where we are at. Like I said, there's been some improvement. David isn't drooling any more, and he can swallow. His memory is fully intact. He can look at all the photos on the wall at the hospital that i put up, and he can tell the therapist the names of everyone, the names and details of the places in the pictures, what he is eating in one of the pictures....it's pretty incredible. (He says talking takes a lot of effort.) He does funny things on purpose, like when I was trying to turn the room lights on, I couldn't figure out why they would go on and then turn off. That's because David was deliberately playing a joke on me by using the light controls on his bed. He did it when he had company and they all laughed. But a few minutes later, he was zoned out. I would talk to him or ask him a question and it's like he's deaf. I put my hand on his arm, and he looks at me quickly like he's startled. His friends come in to visit and he doesn't even look up or seem like he knows they are there. It's so weird how it comes and goes. But I do have to say that he has improved tremendously. He's working hard at the physical and occupational therapy. We will be going to therapy on an outpatient basis.
My life will pretty much be devoted to taking care of David. I feel overwhelmed at the enormity of care he needs but I can do it. I have a lot of great family members who will help me. And I am hoping that David will continue to improve and will need less care.
One last thing....I noticed that the one thing that gets David's attention, the one thing that makes him smile, the one thing that will make him respond and talk...is the mention of his little puppy, Jackson.You know, the one they didn't want him to get. David is really looking forward to getting home and having his puppy with him. He also has a video of his little niece Kaylie on his iPhone and he plays it over and over. She is saying in her cute little baby girl voice, "Please get better, Uncle David. Please come back to us." David had tears trickling down his face as he watched that video. Sometimes I wonder just how much pain we can take.
Love and blessings,