And it just keeps coming…

Well, here we are again and I’m blogging yet again about the latest crappy event. I just need to keep reminding myself that we will survive this and to keep our heads down and keep moving forward. On October 27th on Saturday morning I woke up to David slurring his speech. He was walking up the stairs and was moving with no issues but I couldn’t understand anything he was saying. It was terrifying. I was amazed how calm I was…while in the back of my head I was panicking. I kept thinking stroke. Within 1 minute I was able to understand what he was saying, but it was still extremely slurred. David kept insisting that he was fine and that he was just really tired. I got him to come back downstairs so I could look at him in the light. Once we got downstairs, I noticed that the left side of his mouth was drooping. Somehow I remained completely calm with Alec in one hand and David in the other. I called the on-call doctor and was told we must get to the ER immediately. David still didn’t think anything was wrong, but he “humored” me. We dropped Alec off at the grandparents and as soon as arrived at the ER he was admitted immediately and they began running tests rapidly. They determined very quickly that it was not a stroke, but that it was probably a seizure. After the CT scan they found that he was hemorrhaging in the brain and that the massive amounts of blood was now pushing his brain over, which intern caused the seizure. His brain was 8mm off center and his brain ventricles were smashed together. Dave was rushed in for immediate surgery to release the pressure and remove the fluid. They drilled 2 holes in his head and were able to stabilize him. And the good times keep rollin…

Dave ended up in the NICU unit for 4 days. A drain was put in to dry to remove as much fluid buildup as possible. There were highs and lows during this period. At one point, when the fluid wasn’t cooperating, there were discussions of a more serious surgery to go in with a much more invasive surgery and figure out what the hell was going on and remove the fluid. The problem was that the blood had been in there long enough that his body had begun to already break it down and compartmentalize it into different membranes. As a last ditch effort before surgery, they administered some sort of anti clotting thing into his brain which did the job. He was able to drain a good portion of the fluid. He was moved to the Neuro wing for another 4 days of observation. During this period he missed trick-or-treating which broke David’s heart. He was also visited daily by speech therapists, physical therapists (who didn’t understand why they were assigned to him because he was showering, dressing and going for walks on his own) and various other doctors. He started getting quite surly with all of the testing. They just wanted to make sure his mind hadn’t been affected from the seizure or the subsequent surgeries but I think David was just done being in the hospital. We ended up having the same nurse he had back in June and she was amazing! She kept giving David hell and made sure he was taken care of and went well and beyond the usual call of duty to help him.

They ended up discharging him November 3rd. The fluid hadn’t gone down, but hadn’t gone up and was considered “stable.” They were concerned it would come back, but the concerns of Dave contracting something else in the hospital I think began to outweigh everything else. Dave was mobile and chomping at the bit to get the hell out of there.

Yesterday, after 3 subsequent scans over the last week and a half, we are finally seeing some improvement with the fluid in his brain. There is no new bleeding and the existing has gone down considerably. His brain in back on center and looks really good. He is still on seizure medication and will continue to be for the next couple months. He has the lifting restrictions of 5lbs which thrills David to no end, but happily he doesn’t have any driving restrictions. The surgeon quipped yesterday that his guess to let David out of the hospital worked out. I made a joke that it was probably more than just a guess, and he replied that really it wasn’t. They really weren’t sure which way was it was going to go and that it could have easily have gone either way and he was delighted it went in their favor and David is looking good. Very disconcerting…but at least it was good news. We will continue to get scans done to check now not only on tumor growth, or the lack thereof, and now fluid levels. It will take months to get rid of the remaining fluid. David’s body will begin to break it down on its own and reabsorb it.

From the advice of one of the physical therapists, David is now doing the Nintendo DS Brain Age game. She said that although David’s brain seems fine, after this many surgeries…paths have been cut and neurons won’t be firing the same and that the brain is a very resilient organ. And the more you work it, the more it heals and rebuilds pathways. And we told her about those ads that many of you may have seen lately about the Brain Age games and she thought they were awesome. A friend had bought Dave the Nintendo DS after his first surgery to keep him entertained in the hospital and go figure…it’s now also therapeutic. I plan to start doing it myself. It helps keep your brain young and more resilient. My mom even fell in love with it. It’s harder than you think!

We just have to remember that we will get through this. As the surgeon said, “It’s just a bump and a bad haircut.” It was quite a sizeable bump…but a bump none the less. Oh, by the way. David shaved his head. Half his head had been shaved once again for the surgery and then he was “molting” a bit, probably due to the chemo. It was a hard decision for David, but it was time. He didn’t want to look like he had cancer and he didn’t want to buy into the role of victim. But he’s not a victim. He’s a survivor and he should be proud of it. It looks great and he doesn’t have to do a damn thing with it in the morning. Alec loves rubbing it…it feels like a bunny.

Another “bump” that came with this latest excursion into the hospital is that he was removed from the trial. Not good news. The trial was how he got his meds and they were free. After a lot of stress and an enormous amount of help from our Neuro-Oncologists assistant we were approved for the drug outside of the trial. We needed to get our insurance approval, since it was not the traditional treatment for brain tumors. But since the traditional treatment had failed, we had that going for us. Also, his current drug is the standard treatment for Leukemia patients, so it is on the market. If it hadn’t been…we would have been screwed. But we were approved and then they found out it would be thousands of dollars a month, through our insurance. Insane but what we feared. Somehow, and I don’t know how and I don’t care, his assistant was able to work it through our insurance that we would get it mailed direct and it came out to a much more reasonable rate. I don’t know how people navigate all of the insanity without the help of people in the industry vying for their rights and working the system. After that was all approved, the prescription for his med’s were lost. Lovely. We had to go back through the entire approval process again, but we did and they finally arrived this morning. Dave was off chemo for 2 ½ weeks but he’s doing great and back on the meds and back on the road to recovery!

So. Here we are once again. Surviving and amongst all the chaos trying to keep some semblance of our lives together. There have been some dark moments, some happy moments, some terrifying moments and some just plain crappy moments. They make up the whole and we’re both still here to remember them…and that’s what counts.