Saturday, September 8, 2012


We are thinking positive and packing up a few things.
 Eli sat on the small couch behind us with his legs scrunched up in his favorite position playing his video games. It beeped and blipped quietly reminding us he was back there. The intimate conference room was familiar although I could not with much detail recall our first meeting in the room nine months ago with Dr. Robinson. I was not of a mindset then to make note of the days in minutes, or even in moments, despite the need to do so. Instead, I counted each day an accomplishment as a whole just to make it to the end conscious. But, by the time we had made it to this point then, we knew the size of the monster that attacked us. Still, I sat hollowed out and empty, devoid of sense as he explained with detail and care the findings of the MR imaging done of Eli’s brain and spine that shown on the four oversized computer screens. I sat on the couch that day, with Eli laying his head in my lap. He had been recovering from brain surgery at LaBonheur Children’s Hospital for about three weeks, but we had only been at St. Jude Children’s Research Hospital a couple of days. He and I were thoroughly overwhelmed just navigating our daily schedule, so we were both drained and tired. Vic came over that day for the scans, just as he did this time for this last “reading of the scans.” Eli, now having regained a quality of life that he had been robbed of a year ago, busied himself with his video game alone on the couch as Vic and I sat in chairs up nearer the screens. Again, Eli’s recognizable silhouette appeared, and Dr. Robinson, quickly this time with less coddling, pointed out the areas that had been of concern at the mid-point scans and said it all “looks good.” So, living only in the moment of which we are currently living, focusing my heart and striving for confidence and faith in God’s word written in Matthew 6:34, Eli is today cancer free. It is very difficult for me to write so definitively because I am naturally skeptical and have been open about my certainty of its return. But, technically - and I do like to be technical - for something to return it must first be gone. So, Eli is today cancer free.
Eli getting a check from Dr. Robinson.
The inoperable and second-largest tumor that lived on or in or around (I was never clear), the pituitary gland had shrunk at the mid-point scans and was the same size today. This inactivity in growth, neither bigger nor smaller, coupled with the scan’s information that there was no blood flow through the tissue, tells him that it is dead. Now, my OCD wants it gone, wiped out and clean, but it’s not going to ever be because there was too much tissue present to dissolve. It cannot be biopsied, so the only plan is to watch it for changes at regular scans. That tumor tissue will haunt me until I die. Since there is dead tissue smothering the gland and since Eli has been hit with high-dose radiation to that area, the function of the pituitary gland will be affected. All other tumors were gone, and his spinal fluid, though unable to be collected at this time, showed no signs of cancer at the mid-point scans. The only other question mark, in my mind, is that when the originating tumor was peeled off during resection, Dr. Klimo said then that it had begun to blanket or coat the sheath that protected the brain. Since Eli had to undergo radiation and chemotherapy anyway, he got the bulk of the tumor during surgery and left that part alone because to attempt to resect it might cause unnecessary deficits. There are two scary parts about that for me. First, is that the “coating” did not show up on the MRI. It wasn’t until he opened him up for surgery did they see it. So, my question is if we couldn’t see it on the original MRI’s, how can we know it’s gone. Secondly, that worries me because a relapse almost always starts at the original location of the tumor, which is where this “coating” is or was. So, I don’t like not knowing if it is clean or not. But, Dr. Robinson, just kind of shrugged his shoulders said there was no active blood flow that would indicate activity, and seemed to only want to tell us that it all looked good, and that Eli was doing well. So, they are having us shoot for moving home at the end of the week. I am skeptical, of course, that we will make that deadline. They have cycled Eli’s TPN down hoping that will give his body a chance to want something to eat. He had two or three pinches of different things today, but I had to make him eat that much even. In anticipation of going home, I packed up more than half of the apartment to send back with Vic. I only left our essentials like the Transformers, the Hot Wheels city, the Xbox, the computer and the M&M dispenser. Oh, and some of our clothes.
Eli and Vic putting together a lego thing... better him than me.
I’m so excited to be getting in the encouragement cards written for residents here with a gift certificate meal card, and I have the Eli t-shirts to give away with them that you all bought so long ago. It has been tough getting them handed out because the summer was wild with the other kids, and then Eli’s treatments were crazy jumbled and I need permission from the building manager. She is hard to catch. Please continue prayers for Collin, Blake, Jack and Thomas. Keep Ryan on your list as his mom has decided to give up on Vandy. Thank you all so much for participating in this journey with us, and by supporting us through requests that we make, but mostly for the constant prayers that you offer for us and all the others.

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