January 3rd. Evening

We still wait for a miracle. That appears to be all we have now. Jake is on a morphine pump now for pain and cannot swallow. Therefore he is no longer eating. He still is getting some fluids however they are mixed with the morphine. We appear to have begun to run out of time. The sad situation is that both his heart and lungs are that of a 20 year old, the problem lies within the tumors in his brain. Still, as he begins to travel towards a new existence, outwardly I look at a beautiful human being and find myself again without answers. Although I have no regrets about the way I handled his treatment it is a reality that we learn from experience things to do differently. Time is the key. Early diagnosis, correct first treatment options, all things I now know and with that knowlege would do a little differently. Of course I hope to never have to do this again. Even in the 26 months that we have been fighting things have changed in the battle of this disease. Unfortunately it seems we were unable to stay ahead of the curve as long as we needed to. I remain beside myself that this is happening. I say, he is only 20 and then think of all the children at Rady Childrens Hospital I have seen that will never even reach their first year. That is when I know that Jake will be someplace better. We are all on the road to this place. We are passing through this world. For all of us it is simply a matter of time. For some reason it is necessary for Jake to be there before me. For some reason.