Monday, February 23, 2015

I knew before Dr. Robinson came into our room on Friday that something was different. I had seen him just an hour earlier in the hallway, while Eli was in for a lumbar puncture. I came around a corner, and he was walking by and spoke big as usual, but then his voice trailed off as he continued to rush by. I told myself it was just because I caught him by surprise coming around the corner, both of us in rush. And the change in his face as it dawned on him who I was, was subtle. Bad news is not new territory for him, and not even new territory for us together. It was him and me sitting across from each other in room six as Eli sat between us up on the examination table playing a video game when last he said to me, “we are seeing something.”

I have not the ability to accurately and appropriately put into words either on paper or in person to help you understand the heart-break we are feeling right now. It is not of shock as it was over a year ago when I felt like I suddenly took one step and fell off a cliff. In December 2013, he had been doing so well, looked wonderful, and our check-up would be a milestone two years from diagnosis. So, like full-throttle into a brick wall, I was stunned and breathless when he said, “we see something.” I could only say “What?” This time, when Dr. Robinson sat on the roller-stool and adjusted the beeper on his belt in order to lean forward, and said “we see something,” I just said, “yes.” Eli’s body is tired. I felt that it was and the doctor’s subtle cordiality in the hallway had already delivered the news. Eli has been holding a monstrous evil down for years now, stronger and longer than we thought he would or could. And though I know he has many months of fight left in him, and, considering what he has already endured, is in good shape for the next round, he is worn and the battle has been long. The heart-break this time sitting in room six is more of a weighty and weary disappointment in the reality that we are not the exception, not counted in the “less than five percent”. A shattering heart-break that knows too much and can no longer use denial or ignorance to keep it together.

Eli is going to rest for about 3 weeks, give his bone marrow time to rebound as far as it can, then we will head back to Memphis to discuss options for a new band-aid. We expect St. Jude too tell us they are using an old drug a new way, but still they have no measurable relapse success with it. This is my own personal conclusion, but relapse is just not their interest (and if you are a new patient parent going in, thank goodness! Right, because who wants to hear a doctor say, "Well, we are going to do this really hard treatment that might kill him and since we don't think it will work, we've got this back up plan." Or, "Well, we thought we might pull back a little bit up front and take a chance that it might not work the first time, so that when it comes back we can do more." If you are a new patient parent going in, you want to hear, "We hit it full guns blaring out of the gate, and do not plan for it to ever be back." So, I would not expect anything else, except to me it seems interesting, that because there is not a recognized successful protocol for even original/new diagnoses, there seems to be growing a new field all on its own of relapse). They expect their first treatment to work, so why spend precious time and money on treatment for an outcome they do not expect or intend to have. Eli is just moved to another column in the books and is no longer part of the cure. We expect to gather information on our own as we did last time from other resources, including experienced parents and other hospitals, and present to our doctor things that look interesting to our layman’s eyes. We pray that he will be an open-minded and compassionate guide through all of it, with hope and persistence as motivation. We have a list compiled already, and Vic will be whittling it down before sending it to Dr. Robinson. Meanwhile, life does continue.

Some of you - especially those of you that might be new to our effort - might wonder how Eli is doing and what he knows. We have been embarrassingly blessed traveling down this road to the mouth of the valley in the comfort and protection of our Creator’s hand. Eli is not in pain from the cancer. The cancer has never been solid tumors or located in any areas pressing on anything in his brain that hurts him, makes him feel bad, or inhibits him in any way physically. He has never had a seizure, never a tick, no palsy, no balance issues or any physical struggles that would hinder him beyond what he naturally would have had as Eli (he was never going to be an athlete, nor would he have ever been a kid to climb a tree). He is able to attend to his own normal needs as a boy his age would and should. He can get his own breakfast, prepare his own lunch (when asked to or when he wont wait), take his own bath, dress himself for the day or for bed (all of this when he is in a good mood, there are certainly times when he likes to be ugly and refuse to do these things, but that attitude is unrelated to the cancer). He’s not going to run any races, or ride a bike, but when he feels good, he enjoys playing in the yard when it is warm; he enjoys pretend play with Abbey; he loves to play with all his cars and Bruder trucks, and he enjoys video games. He is still not a friendly kid, very shy, both of which are unrelated to cancer or treatment, and prefers no attention in unfamiliar places from unfamiliar people. He has a small circle of people that he loves. He is as perfect as any little boy can be. He knows he has “new spots”. He knows that his treatment is going to change. He knows that what we do next won’t be as easy as what we have been doing. He knows that we just keep fighting it. That’s all he knows. And, there is really nothing else.

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