Sunday, May 20, 2012

It’s a bumpy ride from Target House II to St. Jude. The condition of the streets of Memphis is varied. Not so much that there are a lot of potholes, although it has its share, but that there are a lot of cracks, unevenness, sinkholes, sharp edges, and patches. That’s not to mention the four-lane street that has been painted to look like six. On Alabama Street (ironically), where we cut over from Poplar Avenue to Lauderdale Street, there is a hole that is more of a sinkhole than a pothole. And, understand that there are many, but there is a specific one that has a vertical strip down the middle of the hole that has not dropped. It’s like a little bridge across the hole and it is the exact width of my tire. If I hit it just right, we never feel a thing, but if I’m off it’s a jolt. I know it’s coming. I know about where it is located, but something about the color of the asphalt or the shading or the angle that hides the hole until the last second. Then I’m either on it, or I’m not. It bothers my OCD to miss it. It will eat at the back of my mind all day. Even though I have navigated through and over countless street faults during the four miles between Target House and St. Jude, that one bothers me if I miss hitting it correctly. Just like those four miles we drive each day, it’s been a bumpy four weeks since we returned to St. Jude to begin chemotherapy. After the initial shock of Eli’s diagnosis and prognosis, we sat down with the doctors in January to listen to the plan. Understand, we are willing and valiant-hearted ourselves, but with our son we did not want to pioneer anything. We wanted to know that they had seen this, and they had a proven protocol for it. The answer was a general “yes” with some understandable caveats. But, desperate to hear a positive note, we hung our hope on that yes. I took slower more steady breaths with that yes. I was able to eat with that yes (which has not been to my favor, actually). I was able to sleep a little with that yes. I was able to be social without becoming a sobbing mess of soggy tissues with that yes. But, since that yes, Eli’s body has been fighting to cut its own path on this journey, not caring about protocols or research or standard procedures. Now, when we sit with the doctors, they scratch their head and say “We don’t know.” Those are frighteningly numbing seconds while the thought sinks in. A team at one of the highest ranked hospitals in the world specializing in the aggressive potentiallly fatal disease my child has, a team that has seen hundreds of children treated on the protocol from which he is treated says it has never seen what is happening. This little seven-year-old body sitting quietly next to me playing Angry Birds is the lone dissenter from decades of research and treatment. When your brain comprehends what the doctors are saying, it sends a message of sadness throughout your body. Your stomach turns and your chest tightens in response. You can’t decide if you want to throw up or faint. The situation in question is the ability of Eli’s body to produce white blood cells for an effective immune system. Records show his count recovered after radiation, but it has dropped since our return to St. Jude and maintained that low number. Chemotherapy will tear down the immune system, and the doctors want to know that his body can recover some on its own. The help of a G-CSF shot will boost his natural ability to recover more quickly. So, with his count already low he was given a shot last Wednesday of G-CSF to stimulate white blood cell production now, but his body did not respond.  A first, the doctors say. The oncologist said that although a low white blood cell count is expected during treatment and will cause delays, he has never seen a child begin treatment at such a low number. Furthermore, he has never seen a child wait 10 weeks after radiation to begin chemotherapy. We are treading outside the proven protocol now. But, are we pioneering new territory or are we just losing ground. It’s weeks like last week in places like this place that you take down that hope that was hanging up so high and get a hard look at it. Has it changed?  Or, maybe it was just too high. Could it just be misplaced altogether. The picture I’m including tonight is of Eli looking out from Mud Island at the riverfront of Memphis. I hope to hear about the bone marrow biopsy Monday, and I do still plan to tentatively be inpatient Monday evening.

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