feeling discouraged

Well, for those of you who are following David's progress....

David seemed to be recovering amazingly well from his brain surgery on 9/27. That was on a Tuesday...he was back attending college on Monday. He had a pretty good week...he was tired but SO happy to be back at school, and he was thinking that he could get on with his life. But now he's having those blindingly bad headaches again. We had to call an ambulance at 5 am today because his headache slowly escalated all night until it was a 9 1/2 on a scale of one to ten. He's tough, so when he feels like he needs to go to ER, I know he's in serious pain.

They gave him Dilaud via IV and did a CAT. The CAT didn't show any bleeding or swelling or any reason for him to be having headaches. They think it might be from the brain surgery. They said that when they go in there, they move things around and it can cause some issues. So they discharged him. His headache was at a 6 when we left. We picked up some breakfast and after we ate, he took a nap. His headache was about a 5 by then. I went home while he was napping. He got up at 3 and it was worse. He took oxycodone, Keppra, Tylenol 3, and his steroids and laid back down. He got up at 6 and his headache is back at a 9 now. I talked to the neurosurgeon on call and she had David take an oral Dilaudid and we are waiting to see if that helps.

We are pretty discouraged. David had the surgery to help with the headaches, and I don't understand why he didn't have headaches the first week after surgery, and now he does. Today was the first time since David was diagnosed in May of 2009 that my husband Larry (David's dad) broke down and wept. He's been so strong and positive without being unrealistic...but David's pain and our worry was just too much for Larry today. It makes me feel terrible to see Larry weep and to know the pain that he is feeling for David.

Today David said that he is thinking of dropping out of college. He said he's not sure he can do it. It broke my heart. I hate for him not to have that goal and the vision for his life. On the other hand, it doesn't matter one ounce to me if he doesn't go to college. It wasn't supposed to be a hardship, an affliction, a costly endeavor for him...it was supposed to be for his good and his enjoyment. I told him that there was no wrong choice...he should just do whatever he wanted to do. I suggested taking just one class for now, and maybe adding more next term. He said he'd think about it. I could hear the discouragement and defeat in his voice.

One good thing. I spoke to our NO's office and I asked, with fear and dread in my heart, what the pathology report showed. They said that the tumor they removed did not show an increase in grade. It's still an anaplastic oligodendroglioma. They said that was good news. I was so afraid that they were going to say that it had gone up a grade. I am guarded about that news though, because we haven't talked to the NO personally. We could go in and he could say stuff like even though it's a grade three, it's growing and behaving like a grade four...or he could say some other crap like that. I never know until I hear it from the NO himself....we've had too many nasty surprises for me to rest easy.

So that's where we are at. Still trusting in God, still holding on to hope, still fighting hard. Just a little worn down today. Hopefully tomorrow will be better.

Love and blessings,
Cindy in Salem, OR
PS David just texted me. His headache is at a 7 now so maybe the Dilaudid is working a little.....