Friday, April 24, 2015

There are many chairs that you don’t want to sit in. I could name 15 in 20 seconds and some of those you, here, have sat in. But, one of those chairs is also mine today. I sat across from researchers at MD Anderson today who told me that there was a problem with Eli's blood sample. Everything is on hold. This is a confusing, disappointing and scary development today. The cells have been in the lab for the last two weeks being prepared for Monday’s much anticipated injection (for many people), and as we were walking into MRI this morning, the phone rang at the desk as we passed. The pediatric clinic called for us to stop, and come back. Dr. Lee, who Vic has written about being a major player in the protocol, said that after the prep in the lab, Eli’s NK cells are not pure. There is more than NK cells left in the sampling that they were going to inject. There is a combination of markers in his blood that they do not recognize. I can’t explain the surreality of sitting in my chair today. Eli played Angry Birds beside me and the weight of the sky pressed on my heart. Dr. Lee was obviously disappointed and sad to tell me the news for many reasons. Eli’s safety is top priority, and this “extra” element in the NK cells is not approved by the FDA to be injected into his brain. There have been no mice anywhere that have been practiced on with this. The team is meeting at 11 to decide what to do. That in his blood could automatically exclude him from the trial, since they know nothing about it. Dr. Lee and the others had been up most of the night searching for answers as to why he was different than the over 100 other times they had stripped NK cells from blood in preparation for this. They are working with some kind of ethics agency, internal, I think, asking that they be allowed to re-harvest his blood and start over. Is Eli unique in his biology, maybe this is just him and it wouldn’t hurt him. So, they are going to the FDA asking that if his blood comes back with the same presentation and they determine it to be safe, can they do it anyway. And, we all know what is growing, aggressively at this point. That growth could cause him to be kicked out anyway. So, now, being off treatment since the first week of February, we have to find that interim treatment, probably intrathecal chemo to hopefully slow it down. So many questions at the midnight hour. For right now, everything is on hold. But, this trial is really not about healing Eli, and we know this. We understand that we have placed him on the altar and that his and our part of the effort is to give doctors a chance to work toward better treatment and a cure for children that may not even be born yet. So, everything with this first treatment has to be perfect, as Dr. Zaky said. Everything has to be perfect to be able to measure the success/failure of it so an anomalous recipient would not be helpful. Dr. Zaky wants us to think positive, and said that because Eli’s cells grew so fast in the lab, enabling us to technically be two weeks early, that to add two weeks of more lab time for another round of blood, really would just put us back on the original time table of four weeks. So, technically because we were early, we would just now be on time… assuming that the second batch of cells is a go. But, I feel like our chances are slim at this point that he will continue in the trial. I'm afraid our work her might be done.

My first struggle is to trust God’s plan for Eli. I really believe in my heart that we were providentially lead to this place, that our path was set in front of us to bring us right here “for such a time as this,” as Mordecai told Esther. Too many things pointed us this way, and too many things paved our way to get us here. I’ve missed too many class parties, too many bedtimes. I’ve sat waiting for too many doctor’s appointments instead of at ballgames, and my kids have missed too many normal kid activities with their own parents for us to just go home. I have to trust that God will take the last three plus years and make them count for good, and that if the only reason we are here is for these doctors to see and document something different in his blood, then we have completed our mission and God is glorified. I’m afraid that I will never have the satisfaction of knowing God’s plan, which will further weaken an already wavering faith. It is exhausting for me, with my immaturity level and attachment to things of this life, to stay on a spiritual level with the understanding and acceptance that our blessings are not on earth. It is exhausting to constantly convince myself that my only prayer for Eli is that he go to heaven. Sitting in my chair, right now, looking out a large window waiting for a call from the doctors, I see two women walking down a sidewalk. One smiled as she noticed a rose blooming in the bed and stepped off the path to go smell it. The other scrolled on her cell phone, took a last drag of her cigarette, then stamped it out on the sidewalk before continuing her distracted walk. That is what I see from my chair.

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