The latest news…

Alec is beginning to calm a bit from the upheaval at home. There haven’t been quite as many tears or tantrums…as things begin to settle back into some sense of normalcy. David hasn’t been sleeping as much and Alec is enjoying his sorely missed dad-time. He still gets upset that Dave can’t lift him, but enjoys crawling all over him on the floor. Alec still tends to loose it when Dave goes out or leaves the room…but that will pass in time…as it did last year.

We went in to see the surgeon last week. I love that guy. Not only is he good…but he has a great sense of humor. He has a very human and down to earth nature, which is hard to come by sometimes with surgeons…especially the good ones. But he talked about the surgery and how it had gone extremely well and showed us the post-operative MRI of David’s brain. It looks like he removed somewhere between a plum and orange sized portion of David’s right temporal lobe. Crazy, huh? David thanked the surgeon for his periodic calls to me during the surgery and told him how much of a difference it made at putting my mind at ease during the hours David was under. The surgeon said that he’s been on the other side, waiting for news while someone he loved was under and that it’s not fun and he now always tries to keep people informed throughout the process.

The surgeon has increased David’s weight restrictions to 10-15 lbs. So, it’s more than a gallon of milk, but still a heck of a lot less than Alec. He still can’t drive, but he’s allowed to begin working 20 hours a week remotely…which will be good both financially and for Dave’s state of mind. He’s getting a bit stir crazy. Last week, every day I came home from work…it looked like a tornado had whipped through the house…leaving chaos in its wake. David would begin projects, realize he couldn’t move or lift something and drop that one and start on another. By Friday, he had taken down our computer network twice, disassembled the TV so it no longer worked and a couple other things I can’t remember at the moment. At least he’s keeping busy, right?

We met with David’s new Neuro-Oncologist on Thursday. It went well and I think he will be just as good as or better than our previous doctor. He has a kind heart and also believes there is always hope and a reason to keep fighting. There was a bit of a frightening moment when the doctor told us there was a problem with Dave’s blood work and that, as of that moment, he was ineligible for the new trial he was supposed to be starting. His lipitoids, which is the white blood cells that fight bacterial and viral infections, were too low. His were 450 and they had to be 500 to begin the trial. Mind you, if his dropped which can very well happen while on chemo…he still could continue the trial. They just can’t be below 500 to begin the trial. We both were a little disconcerted by this news…Seeing as we’ve been told as of right now…until something new comes up the pipe…this is David’s best chance for survival. Good times. They drew more blood and we began the waiting game once again. Unfortunately, there is nothing we can do to increase his numbers…but wait. The doctor said we had a 1 ½ week window before we would be forced to begin a different trial. They don’t want David to be off treatments for too long, otherwise we loose the advantage we got by removing that large portion and a greater chance for more cancer cell growth. But thankfully, we didn’t have to wait long and his numbers skyrocketed in true Dave form up to 847 within days. So, David has been approved for the trial and began it Monday.

This is a phase 2 trial, meaning it’s on the 2nd round of testing and has shown promise among the phase 1 applicants for reduced or complete lack of tumor growth. Since this is such a nasty tumor and it has all of those damn invisible tendrils…it’s impossible to completely remove it all. Which is why David has to be on chemo to try and destroy the remaining cancer cells. This new trial is a chemo drug, Dasatinib, that has been previously used to treat Leukemia. He will be taking it every day, twice a day. Once in the morning and once at night. There will be no days off…but it a smaller dose than he was taking previously.

At first, I was worried about David being on Chemo every day of the month. But I realized the other day, as we sat there in the waiting room, seeing other tumor patients walk past (You could tell by the tell tale scar on their heads) that Dave was doing great. Many people in our same situation are having not only motor function issues but also cognitive problems. Some still have actual portions of the tumor in their heads, being inoperable for different reasons. Many are somewhat, if not completely, debilitated by the Chemo treatments…looking so fragile and sad. But then there’s David. Cruising at mach speed and looking as healthy as can be. And then I realize, that no matter how crappy things are getting, we are lucky. Very lucky. It could be much worse. People talk about how hard it is to get through Chemo…and how those were the worse 6 months of their lives. And yet, here’s David. 1-Year of Chemo completed and a 2nd started…and the plan to continue on it indefinitely until something else presents itself. And he’s moving forward. Living his life. Inspiring us all. Chemo is tough, even on the strongest of people…but we’re finding that having love, hope and strength can pull one through almost anything. Somehow we’ll get through this. Some days it doesn’t feel like it. Some days the Cancer seems to beat us down…looming around us like this oppressive presence. And some days we cry. But today we live and move forward. Today is a new day…

“So stop waiting until you finish school,
until you go back to school,
until you lose ten pounds,
until you gain ten pounds,
until you have kids,
until your kids leave the house,
until you start work,
until you retire,
until you get married,
until you get divorced,
until Friday night,
until Sunday morning,
until you get a new car or home,
until your car or home is paid off,
until spring, until summer, until fall, until winter,
until you die,
until you are born again
to decide that there is no better time than right now to be happy...”
~ Author Unknown