11-3-16

The CT scan showed there is a 2 cm mass on a lymph node behind his bowel, that has doubled in size since the June scan. It is certain enough that it is Nueroblastoma again that they aren't even going to do the biopsy because it also was so "hot" on the MIBG scan. From here, we are going to begin a trial at Mayo on Monday, that gives him new chemos and antibody therapy in 3 week cycles, starting each with infusions for a week at the beginning. We will complete two of these cycles and re-scan to see if the mass has either remained stable or shrunk. If it has, we will continue and can do up to 17 cycles total. If not, we will have to make other decisions on what else we want to try. The doctor explained that with progressive disease, we probably won't be able to cure him. As in, she personally knows of no long-term survivors with this kind of progressive, high risk Nueroblastoma. That, obviously, is a hard pill to swallow.

This chemo shouldn't be as hard on him as what we've done in the past. The antibody infusions are what are painful and are what we were bracing for in immunotherapy already. But I am glad that he won't be so sick. It is hard to go back to constant swings of home/hospital stays, knowing how hard that is on Molly and all of us. But, we will do whatever we need to do to get as much quality time with Drew as we can. I am also glad that we can continue to do treatments at Mayo, a mere 40 minutes away. If we get to the point in the future where we need to consider other options, it will be difficult to give up the convenience and community we have being so close.

We are doing okay. There was laughter in the house tonight. We have lived with the reality that this could be the situation we find ourselves in for 10 months. I was left feeling better today after talking with the doctors, as crazy as that sounds. Its a familiar peace that I've felt before--peace that transcends all understanding from above. I will have more time with him, and he will feel good for a while still. Should I be picturing a 25 year old Drew, seeing him get married or even drive a car? No. But will I see 3 year old Drew? The doctor says yes. And Drew is still SO normal, happy, full of life. That's probably what makes it hard to believe, to accept. In January he was so miserable, literally on the verge of death, that the diagnosis was a relief, an answer. Now we've come so far, and had such high hopes for his future, and have it torn away so suddenly which has been a huge blow. But like I've said this whole time, we are going to chose to find joy in each day. To enjoy him while he's here, and save (most) of our tears for when he's not. This whole journey was not in vain, no matter what. Drew has a huge purpose that is still being realized. He's not done yet, and neither are we!